HD info

 Huntington’s Disease resources and information aggregated and curated with the aim of uniting and informing the HD community. And it’s free.

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General introduction to Huntington’s Disease

HD Primer by Dr. Ed Wild
http://ow.ly/i/auVdK

NATURE REVIEWS DISEASE PRIMERS | PRIMER
Huntington disease Primer
http://www.nature.com/articles/nrdp20155

Cracking Your Genetic Code
http://www.pbs.org/wgbh/nova/body/cracking-your-genetic-code.html

Extensive Source of Information for HD, JHD, Westphal Variant, and “irregular” manifestations of HD
http://endoflifecare.tripod.com/juvenilehuntingtonsdisease/id166.html

Fast Facts About HD
HDSA, 2013. Presents key information about HD and HDSA.
hdsa.org/wp-content/uploads/2015/03/HDSA_Fast-Facts.pdf

Frequently Asked Questions (FAQ) by Diana Raffelsbauer (Several languages)
http://www.euro-hd.net/html/disease/faq

Frequently Asked Questions (FAQ) – Diagnosis (Several languages)
http://www.euro-hd.net/html/disease/faq/faq_diag

HD Basics
http://www.huntington-study-group.org/HDBasics/tabid/91/Default.aspx

HDA Fact Sheets
Frequently Asked Questions (FAQ) by Diana Raffelsbauer (Several languages)
http://www.euro-hd.net/html/disease/faq (in a variety of languages)
http://hda.org.uk/hda/factsheets

HDBuzz Searchable glossary!
http://en.hdbuzz.net/glossary

HDSA’s Publications
http://hdsa.org/shop/publications

HDYO’s You Tube channel includes plenty of educational and informative videos for people of all ages.
http://www.youtube.com/user/HDYOFeed/videos

Help4HD
http://www.help4hd-international.org/story.html

The HOPES Huntington’s Disease Timeline (History of HD)
http://web.stanford.edu/group/hopes/cgi-bin/wordpress/2010/06/the-hopes-huntingtons-disease-timeline-text/

Hopesvideo’s You Tube channel includes over 200 popular HD videos
http://www.youtube.com/channel/UCcBiGYksL4iWyfiUlk-4dZA

Huntington’s Disease A Family Guide
http://www.hdsa.org/images/content/1/4/14765.pdf

Huntington’s Disease Circle (visual representation of HD info, organizations and resources)
http://ndcircle.com/HDCircle/HD.html

Huntington’s Outreach Project for Education, at Stanford (HOPES)
http://hopes.stanford.edu/

JHD, what’s that?
http://youtu.be/IRjVQWJu1Lc

Neurology – Topic 17 Huntingtons disease – patient by University College Dublin
http://youtu.be/KleHA0fv0Eg

On Huntington’s Disease (Several languages)
http://www.euro-hd.net/html/disease?eurohdsid=78bc35f5f938953c0955a1d4c2b32fd4

UCL Huntington’s Disease: The basics
http://hdresearch.ucl.ac.uk/hd-info/hd-basics/

What Is Huntington’s Disease?
http://www.anatomyguy.com/what-is-huntingtons-disease/

General Information in other languages:

Information on Huntington’s Disease in Danish
http://www.vaestoliitto.fi/perinnollisyys/tietolehtiset/

Information on Huntington’s Disease in Finnish
http://www.lhc.dk/materialer/pjecer/hc_orientering.asp

Information on Huntington’s Disease in German
www.m-ww.de/krankheiten/erbkrankheiten/chorea_huntington.html


Reference Materials for Huntington’s Disease

“A Caregiver’s Handbook for Advanced-Stage Huntington’s Disease” by Jim Pollard

“A Physician’s Guide to the Management of Huntington’s Disease”
issued by the HDSA.

“Gene Hunter: The Story of Neuropsychologist Nancy Wexler” by Adele Glimm

“Huntington’s Disease” edited by Gillian Bates, Peter Harper, and Lesley Jones

“Huntington’s Disease: Advocacy Driving Science” (Annual Review of Medicine Book 63) by Nancy S. Wexler

“Huntington’s Disease: Causes, Tests, and Treatments” by John Hewitt M.A. and Michelle Gabata M.D.

“Huntington’s Disease (The Facts)” by Oliver W J Quarrell

“Huntington’s Disease (Oxford Monographs on Medical Genetics)” by Gillian Bates and Sarah Tabrizi

“Huntington’s Disease (Perspectives on Diseases and Disorders)” by Clay Farris Naff and Clayton Farris Naff

“Juvenile Huntington’s Disease: and other trinucleotide repeat disorders” edited by Oliver W.J. Quarrell & others

“Neurobiology of Huntington’s Disease: Applications to Drug Discovery” (Frontiers in Neuroscience) by Donald C. Lo and Robert E. Hughes

“Omega-3 Oils: A Practical Guide” by Donald Rudin and Clara Felix

“Stigma, history, and Huntington’s disease” by Alice Wexler
http://dx.doi.org/10.1016/S0140-6736(10)60957-9

“The Agile Gene: How Nature Turns on Nurture” by Matt Ridley

“The Official Patient’s Sourcebook on Huntington’s Disease: A Revised and Updated Directory for the Internet Age” edited by James N. Parker and Philip M. Parker

“The Woman Who Walked into the Sea: Huntington’s and the Making of a Genetic Disease” by Alice Wexler

“Understanding Behavior in Huntington’s Disease” by Jane S. Paulsen


Juvenile Huntington’s Disease resources

Could my child have JHD?

“Symptoms, Myths and the Unheard Facts”
http://jhdkids.com/symptoms-myths-and-the-unheard-facts/

Clinical characteristics of childhood-onset (juvenile) Huntington disease: report of 12 patients and review of the literature.
http://www.ncbi.nlm.nih.gov/pubmed/16901424

Description of JHD
http://www.hdsa.org/living-with-huntingtons/family-care/juvenile-hd/index.html

Extensive Source of Information for HD, JHD, Westphal Variant, and “irregular” manifestations of HD
http://endoflifecare.tripod.com/juvenilehuntingtonsdisease/id166.html

How are the symptoms of JHD different from HD? (HOPES)
http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/juvenile-huntingtons-disease-text-and-audio/#how-are-the-symptoms-of-juvenile-hd-different-from-those-of-adult-onset-hd

Juvenile HD (HOPES)
http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/juvenile-huntingtons-disease-text-and-audio/

Juvenile Huntington’s Disease: The Cruel Mutation by Ricki Lewis, PhD
http://blogs.plos.org/dnascience/2013/05/30/juvenile-huntingtons-disease-the-cruel-mutation/

JHD, what’s that?
http://youtu.be/IRjVQWJu1Lc

Presymptomatic Testing of Children for Huntington’s Disease, AMA Journal of Ethics
http://virtualmentor.ama-assn.org/2009/09/ccas2-0909.html

Psychiatric and cognitive difficulties as indicators of Juvenile Huntington Disease onset in 29 patients.
http://www.ncbi.nlm.nih.gov/pubmed/17562929

JHD Advocacy, information and resources

Article: “The Amazing Cameron Brown”
http://www.thehuntingtonspost.org/SharonMT4

Friends of Karen
http://www.friendsofkaren.org/

Help4HD JHD Kids Walk
http://www.firstgiving.com/help4hd/jhd-kids-walk

Help4JHD.org
http://www.help4jhd.org/

Help 4 JHD | Facebook PayPal link for JHD Walk
https://www.facebook.com/help4jhd

JHD Initiative- Kids Helping Kids with Juvenile Huntington’s Disease and their Families
http://jhdkids.com/

JHD (UK)
http://hda.org.uk/jhd

JHD families website (UK)
http://www.jhdfamilies.co.uk/

“Juvenile HD and the School Experience: Education and the Child Affected by Juvenile Onset HD” Edited by Martha Nance, MD. This free book provides support and guidance to schools
who have a student with Juvenile HD
http://hdsa.org/wp-content/uploads/2015/03/JuvenileHD-and-the-School-Experience.pdf

“The Juvenile HD Handbook: A Guide for Families and Caregivers”(2nd Edition)
Martha Nance, MD, 2007. Free book provides information about Juvenile HD, including genetic testing, when genetic testing is appropriate,
understanding your HD affected child, handling compromising situations and where to turn for help.
http://hdsa.org/wp-content/uploads/2015/03/Juvenile-HD-Handbook_2nd-Edition.pdf

Juvenile Huntington’s Disease Circle
http://ndcircle.com/HDCircle/JHD.html

Juvenile Huntington’s Disease Walk
http://heyevent.com/event/7573247943

“Juvenile Onset HD”- HDSA Family Guide Series
Edited by Martha Nance, MD, Randi Jones PhD, Suzanne Imbriglio PT and Betsy Gettig MS/CGC. This free pamphlet defines Juvenile HD, addresses diagnosis,specific medical issues, prognosis of the disease, financial, legal and social issues and more.
http://hdsa.org/wp-content/uploads/2015/03/Juvenile-Onset-HD_Family-Fuide-Series.pdf

Members’ Statement on Huntington’s Disease
https://youtu.be/40r76FbAhUo


Huntington’s Disease resources for children and young adults

“Afraid, a Book for Children “at risk” for Huntington’s Disease (fiction) by Michelle Thompson

Asociación Corea de Huntington Española
http://www.hdsa.org/images/content/1/2/12749.pdf

“HDYO Hot seat with Kristen Powers”
March 28, 2015
http://en.hdyo.org/eve/news/364

Huntington’s Disease Youth Organization (HDYO)
hdyo.org

Local Support (HDYO)
http://en.hdyo.org/eve/local

HDSA National Youth Alliance
http://www.hdsa.org/nationalyouthalliance/nya-1/index.html

HDSA’s National Youth Alliance
https://m.facebook.com/HDSANYA

HOPES Social Story for children
http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/bryans-dad-has-huntingtons-disease-text/

Huntington’s Hope Scholarship fund
http://huntingtonshope.org/

Illinois Resources (contains some nation-wide info, too)
http://illinois.hdsa.org/userfiles/hd-il-resources-august-2014-111891429822349.pdf

North American HD Youth Camp (HDYO)
http://en.hdyo.org/eve/news/337

¿Qué es la Enfermedad de Huntington? (HDYO)
http://es.hdyo.org/eve/articles/57

Scottish Huntington’s Association Youth Project
http://www.hdscotland.org/shayp

TedxTeen Talk- “The InnerKid Philosophy: Kristen Powers”
https://youtu.be/l6JiBiMqiI4

The Impact of Huntington’s Disease on Young People by HDYO
https://youtu.be/P2A0bGMDZW4

Young People Affected by Huntington’s Disease (Canada)
http://ypahd.ca/

Youth Mentorship Program (Canada)
http://www.huntingtonsociety.ca/learn-about-hd/youth/youth-mentorship-program/


Genetic testing for Huntington’s Disease

Australian Government- Genetics and human health
http://www.nhmrc.gov.au/health-topics/genetics-and-human-health

“D.I.Y. DNA: Genetic testing at home is risky business” by Charlie Gillis March 23, 2015
http://www.macleans.ca/i/?ap=http%3A//www.macleans.ca/society/health/d-i-y-dna-genetic-testing-at-home/&ac=MME&aa=%2Frogers.publishing%2FMacleans.CPGBusiness&at=10

Genetic Testing for Huntington’s Disease: Its Relevance and Implications (US)
http://www.hdsa.org/images/content/1/1/11884.pdf

Genetic Testing – Huntington’s Disease- Family Guide Series (US)
http://www.hdsa.org/images/content/1/4/14766.pdf

Genetics (Polish)
http://www.huntington.pl/choroba/ci/genetyka

Huntington’s disease – Diagnosis (UK)
http://www.nhs.uk/Conditions/Huntingtons-disease/Pages/Diagnosis.aspx

Huntington’s Disease and Presymptomatic Testing (UK)
http://www.geneticalliance.org.uk/docs/translations/english/12-huntington-t.pdf

Huntington Disease Genetics (US)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC534940/

The National Centre for Medical Genetics (Ireland)
http://www.genetics.ie/

Huntington’s Disease, Genetics by kedlax7
http://youtu.be/S6o2-BgKgOo

Predictive Testing for Huntington Disease
http://predictivetestingforhd.com/

Recommendations for the predictive genetic test in Huntington’s disease (EURO)
http://www.euro-hd.net/html/disease/huntington/interesting/ehdn-genetic-testing-guidelines.pdf

Referral List of Facilities Offering Predictive Genetic Testing for Huntington’s Disease (HDSA)
http://www.hdsa.org/living-with-huntingtons/family-care/living-at-risk/genetic-testing-centers/index.html

Victorian Clinical Genetics Services (Australia)
http://www.vcgs.org.au/

In vitro fertilization

Frequently Asked Questions (FAQ) – Having Children (Several languages)
http://www.euro-hd.net/html/disease/faq/faq_child

Genesis Genetics
http://genesisgenetics.org/

Google scholar results
https://scholar.google.com/scholar?q=in+vitro+fertilization+huntington%27s+disease&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ei=MsbzVI7yMouxggS-uIG4Ag&ved=0CAgQgQMwAA8:12 AM 3/2/2015

HD Free With PGD!
Planning an HD-free family with IVF/PGD
http://hdfreewithpgd.com/

Human Fertilisation and Embryology Authority (UK)
http://www.hfea.gov.uk/

IVF
http://www.nhs.uk/conditions/IVF/Pages/Introduction.aspx?url=Pages/Overview.aspx

“Making babies: having a family, the HD way” from HDBuzz
http://en.hdbuzz.net/036

Meet the little girl who’s been ‘designed’ to help beat Huntington’s disease
http://www.telegraph.co.uk/news/science/11442926/Meet-the-little-girl-whos-been-designed-to-help-beat-Huntingtons-disease.html

 


Science/medical journals

Euro-HD Newsletter
http://www.euro-hd.net/html/disease/archive/

Futurity – Research news from top universities
http://www.futurity.org/

Genetic Engineering & Biotechnical News
http://www.genengnews.com/

Journal of Huntington’s Disease
http://www.iospress.nl/journal/journal-of-huntingtons-disease/

Neurosciencenews.com
http://neurosciencenews.com/

# Rare Daily
http://paper.li/GlobalGenes/1326904002

Stem Cells and Development
http://www.liebertpub.com/overview/stem-cells-and-development/125/

Stem Cells Journal
http://www.stemcellsportal.com/sister_journals_stem_cells_current_issue

 Professional Organizations
American College of Medical Genetics and Genomics
https://www.acmg.net/

American Society for Biochemistry and Molecular Biology
http://www.asbmb.org/

Biotechnology Industry Organization
https://www.bio.org/

Federation of American Societies for Experimental Biology (FASEB)
http://www.faseb.org/

The American Society of Gene & Cell Therapy
http://www.asgct.org/

The Genetics Society of America
http://www.genetics-gsa.org/

The European Society of Gene and Cell Therapy (ESGCT)
http://www.esgct.eu/

Society for Neuroscience
http://www.sfn.org/


Huntington’s Disease medical and related services

Clinical sites in North Carolina – from HD Reach
http://hdreach.org/medical-care/clinical-sites/

Duke Neurological Disorders Clinic at Morreene Road
http://www.dukemedicine.org/locations/duke-neurological-disorders-clinic-morreene-road

HDSA Centers of Excellence (US)
http://www.hdsa.org/living-with-huntingtons/community-services/centers-of-excellence/index.html

HDSA physician listing (a service to HD families and is for informational purposes)
http://www.hdsa.org/living-with-huntingtons/community-services/physician-listing/index.html

UC Davis Huntington’s Center acknowledged by HDSA as a Level 1 HD Center of Excellence.
http://www.ucdmc.ucdavis.edu/publish/news/newsroom/9740

UCL Huntington’s Disease Research HD Multidisciplinary Clinic (UK)
http://hdresearch.ucl.ac.uk/hd-clinic/

Frequently Asked Questions (FAQ) – Support for HD affected people (Several Languages)
http://www.euro-hd.net/html/disease/faq/faq_support

We Are Hdsa Newsletter
http://www.hdsa.org/living-with-huntingtons/publications/wearehd/index.html


Latest Huntington’s Disease research findings

Go-to sources for research news:

At Risk for Huntington’s Disease (Gene Veritas) Gene is usually the first at the scene of breaking HD news.
curehd.blogspot.com/

Dementias and neurodegeneration (research)
http://www.crn.nihr.ac.uk/dementia/

HD Research News & Reports
http://hdsa.org/hd-research/research-news-reports/

HDSA Research Webinar Series
http://www.hdsa.org/research/research-webinar-series/index.html

Research4hd
http://www.research4hd.org/

Huntington’s Disease in High Definition
https://www.hdinhd.org
Select the Data Portal icon to download all currently available scientific data.

Jan Nolta Lab in the UC Davis Medical Center
Institute for Regenerative Cures
http://www.jannolta.com/

Newshd
http://www.newshd.net/

News HDBuzz  – Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.
http://en.hdbuzz.net\

Video Postcard from 2015 HD Therapeutics Conference April 29, 2015
http://chdifoundation.org/

Recent or interesting articles

“Mechanisms of RNA-induced toxicity in CAG repeat
disorders.” Nalavade et al.
http://www.nature.com/cddis/journal/v4/n8/pdf/cddis2013276a.pdf

“Fingolimod: MS Drug Improves Huntington’s Disease Cognitive Deficits” by Denise Rosenfeld July 13, 2015
http://reliawire.com/2015/07/fingolimod-ms-drug-improves-huntingtons-disease-cognitive-deficits/

“The RNAi Cure?” by Susan K. Lewis July 1, 2005 NOVA scienceNOW
http://www.pbs.org/wgbh/nova/body/rnai-cure.html

Molecular Psychiatry advance online publication 23 June 2015; doi: 10.1038/mp.2015.81
“Huntington’s disease cerebrospinal fluid seeds aggregation of mutant huntingtin”
http://www.nature.com/mp/journal/vaop/ncurrent/full/mp201581a.html

“TSRI scientists awarded $2.1 million grant to study protein closely linked to Parkinson’s disease” June 10, 2015
http://www.news-medical.net/news/20150610/TSRI-scientists-awarded-2421-million-grant-to-study-protein-closely-linked-to-Parkinsons-disease.aspx

“New Hope for ALS Sufferers” June 10, 2015
http://www.genengnews.com/gen-news-highlights/new-hope-for-als-sufferers/81251371/
“Using Brain Images to Predict Huntington’s Disease
Research may lead to more personalized treatment” by Brain & Spine Team June 9, 2015
http://health.clevelandclinic.org/2015/06/using-brain-images-to-predict-huntingtons-disease/
“What You Need to Know About Genetic Information Discrimination” by Dan Kalish, PayScale June 08, 2015
http://www.payscale.com/career-news/2015/06/what-you-need-to-know-about-genetic-information-discrimination
“Should we edit the genetic essence of life?” by Margaret Somerville Special to The Globe and Mail June 08, 2015
http://www.theglobeandmail.com/globe-debate/should-we-edit-the-genetic-essence-of-life/article24827864/

Neurosurgeon launches £900,000 crowd-funding appeal
http://www.bbc.com/news/uk-england-bristol-33009989 4 June 2015

“UNC researchers create DNA repair map of the entire human genome” by Aziz Sancar, MD, PhD
May 1, 2015 UNC School of Medicine
http://news.unchealthcare.org/news/2015

“Epigenetic Role for Ubiquitin Receptors Genetic Engineering & Biotechnology News” April 29, 2015
http://www.genengnews.com/gen-news-highlights/epigenetic-role-for-ubiquitin-receptors/81251209/

“Designer baby controversy: Scientists edit genome of human embryo” by ASHLEY WELCH CBS NEWS April 24, 2015

http://www.cbsnews.com/news/designer-baby-controversy-scientists-edit-genome-of-human-embryo/

“New Drug Improves Chorea Movements in Huntington Disease” by Christin L. Melton ELS Published Online: Friday, Apr 24, 2015 Rare Disease Report
http://www.raredr.com/articles/New-Drug-Chorea-Huntington

“Latest report on Global huntingtons disease therapeutics market size, trends, segments analysis and forecast to 2020” by Glen Hare WhaTech Premium April 18,2015
http://www.whatech.com/market-research-reports/press-release/medical/55086-latest-report-on-global-huntingtons-disease-therapeutics-market-size-trends-segments-analysis-and-forecast-to-2020

“UT Southwestern Acquires Next-Generation Microscopes to Create Whole Brain Imaging Facility” April 17, 2015
http://www.newswise.com/articles/ut-southwestern-acquires-next-generation-microscopes-to-create-whole-brain-imaging-facility

“New research leads to faster diagnoses, treatment plans” by Allison Luety, April 17, 2015
http://www.iowastatedaily.com/news/academics/article_908ef060-e479-11e4-b623-bbece358c173.html

PUBLIC RELEASE: April 16, 2015
“Study finds major vascular anomalies in the brains of people with Huntington’s disease”
http://www.eurekalert.org/pub_releases/2015-04/ul-sfm041615.php

“Teva’s Auspex Acquisition Leaves Open Questions On SD-809” CT Financial News April 15, 2015
http://ctfinancialnews.com/tevas-auspex-acquistion-leaves-open-questions-on-sd-809/

“Study shows novel pattern of electrical charge movement through DNA” Phys.org April 14, 2015
http://phys.org/news/2015-04-pattern-electrical-movement-dna.html

“Voyager Therapeutics Raises $60M Series B Round, Preps for New Gene-Therapy Trials” by Brian Gormley April 13, 2015
http://pevc.dowjones.com/Article?an=DJFVW00120150413eb4dqy206&cid=32135029&ctype=ts&ReturnUrl=http%3a%2f%2fpevc.dowjones.com%2fArticle%3fan%3dDJFVW00120150413eb4dqy206%26cid%3d32135029%26ctype%3dts

“Research and Markets: Global Huntington’s Disease Pipeline Highlights Report 2014” April 9, 2015
http://www.businesswire.com/news/home/20150409006092/en/Research-Markets-Global-Huntingtons-Disease-Pipeline-Highlights#.VSpdnfnF-So

“Singulex, CHDI Collaborate on Biomarkers for Huntington’s Disease” April 09, 2015 Genome Web
https://www.genomeweb.com/business-news/singulex-chdi-collaborate-biomarkers-huntingtons-disease

“Family’s delight at university grant to find Huntington’s cure” by Alex Wood April 08, 2015 Plymouth Herald
http://www.plymouthherald.co.uk/Family-s-delight-university-grant-Huntington-s/story-26303377-detail/story.html

“Study to investigate a potential therapy at cellular level for Huntington’s disease” April 8, 2015
http://medicalxpress.com/news/2015-04-potential-therapy-cellular-huntington-disease.html

“Broken cellular communication in brain contributes to Huntington’s disease symptoms, IU study finds” April 6, 2015 IU Bloomington News
http://news.indiana.edu/releases/iu/2015/04/huntingtons-disease-cell-interaction.shtml

“siRNA screen identifies ​QPCT as a druggable target for Huntington’s disease” published online 06 April 2015 Nature
http://www.nature.com/nchembio/journal/vaop/ncurrent/full/nchembio.1790.html

“New drug for Huntington’s disease to be tested in Vancouver” by Thandi Fletcher Metro News April 8, 2015
http://www.newshd.net/articles/7080/new-drug-for-huntingtons-disease-to-be-tested-in-vancouver/

“Supreme Court considers impact of disability law on police” March 21, 2015 5:54 am • BY TAMI ABDOLLAH and SAM HANANEL
http://santamariatimes.com/news/national/govt-and-politics/supreme-court-considers-impact-of-disability-law-on-police/article_29b25358-5d8d-580f-9941-707d92a2ff5b.html

“Study: Cannabinoids may treat neurodegenerative diseases” BY TGT JULY 1, 2014
http://theganjanews.com/2014/07/study-cannabinoids-may-treat-neurodegenerative-diseases/

Results of Auspex Pharmaceuticals’ Phase 3 Registration Trial of SD-809 to be Presented at AAN Annual Meeting on April 18-25, 2015
http://www.newshd.net/organization/7026/results-of-auspex-pharmaceuticals-phase-3-registration-trial-of-sd-809-to-be-presented-at-aan-annual-meeting/

“The precious participation of the Huntington’s disease community in the quest for treatments: a report on the 2015 HD Therapeutics Conference” by Gene Veritashttp://curehd.blogspot.com/2015/03/the-precious-participation-of.html

A Faustian bargain – March 5, 2015
http://www.newshd.net/articles/6955/a-faustian-bargain/

Alzheimer’s article that may prove relevant to HD Cure
http://www.sciencealert.com/new-alzheimer-s-treatment-fully-restores-memory-function

CRISPR/Cas9 Can Now Edit RNA, Not Just DNA – Oct 6, 2014
http://www.genengnews.com/gen-news-highlights/crispr-cas9-can-now-edit-rna-not-just-dna/81250438/

European Huntington´s Disease Network 8th EHDN Plenary Meeting.
http://www.euro-hd.net/html/ehdn2014/plenary-report-2014.pdf

Genetic Discovery May Help Determine Effectiveness of Huntington’s Disease Treatments
http://www.healthcanal.com/brain-nerves/brain-diseases/60897-genetic-discovery-may-help-determine-effectiveness-of-huntington%E2%80%99s-disease-treatments.html

HD Therapeutics Conference Keynote speech by Dr. Jeff Carroll(sponsored by the CHDI Foundation, Inc.) on February 23, 2015. Dr. Carroll has the genetic mutation for Huntington’s disease and is one of the folks behind HDBuzz. (via Gene Veritas) https://vimeo.com/120604026

HOW CELLS KNOW TO RUSH IN AND HEAL
http://www.futurity.org/wounds-cells-healing-874912/

Huntingtin facilitates selective autophagy.
http://www.ncbi.nlm.nih.gov/pubmed/25720962

Largest creatine clinical trial for Huntington’s disease halted after ‘futility’ analysis”
http://en.hdbuzz.net/181

Proteotoxic Stress Induces Phosphorylation of p62/SQSTM1 by ULK1 to Regulate Selective Autophagic Clearance of Protein Aggregates.
http://www.ncbi.nlm.nih.gov/pubmed/25723488

Rare Genomics Institute to award more than $600,000 Worth of Research for Rare Diseases
https://globalgenes.org/raredaily/rare-genomics-institute-to-award-more-than-600000-worth-of-research-for-rare-diseases/

Reduction in Subventricular Zone-Derived Olfactory Bulb Neurogenesis in a Rat Model of Huntington’s Disease Is Accompanied by Striatal Invasion of Neuroblasts.
http://www.ncbi.nlm.nih.gov/pubmed/25719447 free article

Current update on synopsis of miRNA Dysregulation in Neurological Disorders.
http://www.ncbi.nlm.nih.gov/pubmed/25714967

Corticostriatal synaptic adaptations in Huntington’s disease.
http://www.ncbi.nlm.nih.gov/pubmed/25700146

The CB1 cannabinoid receptor signals striatal neuroprotection via a PI3K/Akt/mTORC1/BDNF pathway.
http://www.ncbi.nlm.nih.gov/pubmed/25698444

Could astrocytes be the primary target of an offending agent causing the primary degenerative diseases of the human central nervous system? A hypothesis.
http://www.ncbi.nlm.nih.gov/pubmed/25697116

Non-Coding RNAs – Biomarker Strategies Evolve from miRNA to IncRNA (Feb 11, 2015)
http://www.genengnews.com/ebooks

Loss of the thyroid hormone-binding protein Crym renders striatal neurons more vulnerable to mutant huntingtin in Huntington’s disease.
http://www.ncbi.nlm.nih.gov/pubmed/25398949 free article

Disruption of the nuclear membrane by perinuclear inclusions of mutant huntingtin causes cell-cycle re-entry and striatal cell death in mouse and cell models of Huntington’s disease.
http://www.ncbi.nlm.nih.gov/pubmed/25398943 free article

Genzyme, Voyager Launch Up-to-$845M Gene Therapy Collaboration
http://www.genengnews.com/gen-news-highlights/genzyme-voyager-launch-up-to-845m-gene-therapy-collaboration/81250920/

Influence of the protein context on the polyglutamine length-dependent elongation of amyloid fibrils.
http://www.ncbi.nlm.nih.gov/pubmed/25489872

Safety, pharmacokinetics, pharmacogenomics and QT concentration-effect modelling of the SirT1 inhibitor selisistat in healthy volunteers.
http://www.ncbi.nlm.nih.gov/pubmed/25223836 Selisistat

Taking new targets to the bank: the DNA repair protein ‘ATM’ is overactive in Huntington’s disease by Terry Jo Bichell,  edited by Dr Tamara Maiuri
http://en.hdbuzz.net/192
March 09, 2015

Targeting ATM ameliorates mutant Huntingtin toxicity in cell and animal models of Huntington’s disease.
http://www.ncbi.nlm.nih.gov/pubmed/25540325

The common inhaled anesthetic isoflurane increases aggregation of huntingtin and alters calcium homeostasis in a cell model of Huntington’s disease.
Wang Q1, Liang G, Yang H, Wang S, Eckenhoff MF, Wei H. E-pub 2010 Nov 6.
http://www.ncbi.nlm.nih.gov/pubmed/21059370

The role of the amygdala during emotional processing in Huntington’s disease: From pre-manifest to late stage disease.
http://www.ncbi.nlm.nih.gov/pubmed/25700742 free article

UCLA researchers identify molecular ‘switch’ that causes Huntington’s disease–like symptoms in mice
http://www.newshd.net/university-2/6878/ucla-researchers-identify-molecular-switch-causes-huntingtons-disease-like-symptoms-mice/


The process of Huntington’s Disease research and how to become involved

FasterCures
http://www.fastercures.org/

UCL HUNTINGTON’S DISEASE RESEARCH
INFORMATION FOR PATIENTS, RELATIVES AND CARERS
http://hdresearch.ucl.ac.uk/

Huntington’s Disease Clinical Research ›› FAQ
http://hdresearch.ucl.ac.uk/research/faq/

The Huntington’s Disease Pipeline
http://web.stanford.edu/group/hopes/cgi-bin/wordpress/2010/06/the-huntingtons-disease-pipeline/
NIH: National Center for Advancing Translational Sciences
https://ncats.nih.gov/

How to participate in HD clinical trials/studies

ClinicalTrials.gov a US registry
https://clinicaltrials.gov/

Enroll-HD
https://www.enroll-hd.org

EHDN Working Groups
http://www.euro-hd.net/html/network/groups

H4HDiRegister.org – The new international registry for HD!
www.h4hdiregister.org

HDSA HD TrialFinder
http://www.hdtrialfinder.org

How to take part in a study (UK)
http://www.crn.nihr.ac.uk/can-help/patients-carers-public/how-to-take-part-in-a-study

Huntington’s Disease
You can help accelerate research(financial compensation for blood donation)
https://donate.sanguinebio.com

Huntington Society Canada clinical trials
http://www.huntingtonsociety.ca/2015-hd-clinical-trials/

Huntington Study Group
http://www.huntington-study-group.org/CurrentClinicalTrials/tabid/81/Default.aspx

Predict-HD
https://www.predict-hd.net/

UCL Huntington’s Disease Research- Current Studies
http://hdresearch.ucl.ac.uk/current-studies/


Stem Cell research and therapy

California’s Stem Cell Agency
California Institute for Regenerative Medicine
https://www.cirm.ca.gov/

Stem Cells Portal
http://www.stemcellsportal.com/

Stem Cell Research & Therapy
http://stemcellres.com/

World Stem Cell Summit
http://worldstemcellsummit.com/


Huntington’s Disease approved drug(s)

Tetrabenazine
http://en.wikipedia.org/wiki/Tetrabenazine


HD symptoms and/or treatment suggestions

Extensive Source of Information for HD, JHD, Westphal Variant, and “irregular” manifestations of HD
http://endoflifecare.tripod.com/juvenilehuntingtonsdisease/id166.html

Huntington’s Disease Drug Works
edited by LaVonne Veatch Goodman, M.D.  – Addresses symptomatic treatment of anxiety, apathy, chorea, cognition, depression, insomnia, irritability, obsessive compulsive disorder, psychosis and rigidity
http://hddrugworks.org/

HDSA Living with Huntington’s publication topics
include general information, genetics and genetic testing, caregiving, clinical care, physical and occupational therapy, juvenile huntington’s disease, behavior, nutrition and swallowing, personal and family issues, research, others, foreign language publications
and law enforcement kit
http://www.hdsa.org/living-with-huntingtons/publications/index.html

“A Physician’s Guide to the Management of Huntington’s Disease” (3rd edition)
Martha A. Nance, MD, Jane S. Paulsen, PhD, Adam Rosenblatt, MD, Vicki Wheelock, MD, HDSA 2011. Includes in-depth information on principles of treatment, genetic testing, medications, management of cognitive and
behavioral problems and a new section with case studies
http://hdsa.org/wp-content/uploads/2015/03/PhysiciansGuide_3rd-Edition.pdf

Behaviors: understanding them

HD Reach
(This organization does a great job explaining what is happening in the brain and how those changes are expressed in behavior. I wish every state/country had an HD Reach!)
http://hdreach.org/for-families/understanding-behavior/behaviors-occurs

HD Reach
iCare (Includes a list of possible emotional triggers)
iCARE is a way to remember different techniques when emotions run high.
http://hdreach.org/for-families/understanding-behavior/icare/

How to target psychiatric symptoms of Huntington’s disease
http://www.currentpsychiatry.com/home/article/how-to-target-psychiatric-symptoms-of-huntingtons-disease/8a347f053f3f7c8c223d8bd49b526ec0.html
Psychiatric disorders in Huntington’s disease: a 2-year follow-up study.
Reedeker W1, van der Mast RC, Giltay EJ, Kooistra TA, Roos RA, van Duijn E.
http://www.ncbi.nlm.nih.gov/pubmed/22458993

Support Group for handling difficult behaviors
https://www.caring.com/support-groups/handling-difficult-behaviors

“Understanding Behavior in Huntington’s Disease”  by Jane S. Paulsen
http://www.hdsa.org/images/content/1/1/11704.pdf

Chorea

Chorea & Huntington’s Disease
http://www.movementdisorders.org/MDS/About/Movement-Disorder-Overviews/Chorea–Huntingtons-Disease.htm

Chorea Symptom Checklist
http://www.choreamatters.com/About-HD-Chorea/Managing-Chorea-Symptoms.aspx

Communication

Management of speech, language and communication difficulties in Huntington’s disease
http://www.euro-hd.net/html/disease/huntington/interesting/speech-language-and-communication-difficulties.pdf

Strategies to enhance communication (HSC)
http://www.huntingtonsociety.ca/wp-content/uploads/2013/10/Strategies_to_Enhance_Communication1.pdf

HD Reach
Empathy and Communication (Families need to demonstrate empathy)
http://hdreach.org/for-families/understanding-behavior/empathy/

American Speech-Language-Hearing Association
Speech Language and Swallowing
http://www.asha.org/public/speech/disorders/HuntingtonsDisease.htm

Communication/assistive technology

The International Society for Augmentative and Alternative Communication (ISAAC)
https://www.isaac-online.org/english/home/
https://www.isaac-online.org/english/online-store/

List of state Assistive Technology resources (US)
http://resnaprojects.org/allcontacts/statewidecontacts.html

To get your IPad as a speaking computer (Dutch)
http://www.hartvannederland.nl/top-nieuws/2015/autistische-tim-spreekt-dankzij-speciale-app/

Dystonia

Dystonia Medical Research Foundation
Dystonia treatment must be highly customized.
https://www.dystonia-foundation.org/living-with-dystonia/treatments

Dystonia
http://www.movementdisorders.org/MDS/About/Movement-Disorder-Overviews/Dystonia.htm

Dystonia-Predominant Adult-Onset Huntington Disease
Association Between Motor Phenotype and Age of Onset in Adults
JAMA Neurology
http://archneur.jamanetwork.com/article.aspx?articleid=777473

Nutrition

Guidelines For Meeting The Nutritional Needs Of People With Huntington’s Disease (UK)
http://www.huntingtonsnsw.org.au/information/nutrition

Nutritional management of individuals with Huntington’s disease: nutritional guidelines
http://www.euro-hd.net/html/disease/huntington/interesting/nutritional-management.pdf

Oral feeding in Huntington’s disease: a guideline document for speech and language therapists
http://www.euro-hd.net/html/disease/huntington/interesting/oral-feeding.pdf

Obsessive-Compulsive Disorder

The Urge to React : Obsessive Compulsive Disorder and Huntington’s Disease by John Barkenbus, MD (HDSA) (Remarkable descriptions of the types of OCD behaviors manifested by people with HD, as well as practical advice for caregivers.)
http://www.hdsa.org/images/content/1/3/13091.pdf

Oral Health

Guidelines for oral healthcare of adults with Huntington’s disease
http://www.euro-hd.net/html/disease/huntington/interesting/oral-healthcare.pdf

Perseveration

HD Reach
http://hdreach.org/for-families/understanding-behavior/perseveration/

Physiotherapy/Physical Therapy

Physiotherapy clinical guidelines for Huntington’s disease
http://www.euro-hd.net/html/disease/huntington/interesting/physiotherapy2.pdf

Development of physiotherapy guidance and treatment-based classifications for people with Huntington’s disease
http://www.eurohd.net/html/disease/huntington/interesting/physiotherapy.pdf

“Physical and Occupational Therapy – Huntington’s Disease”
Suzanne Imbriglio, PT, HDSA, 2010. Provides helpful information and resources for people in all stages of HD. Revised and updated in 2010 to include new trends in HD care.
http://hdsa.org/wp-content/uploads/2015/03/PhysicalOccupationalTherapy_FamilyGuide.pdf

Swallowing
Alternative Speech and Swallowing Solutions
http://www.alternativespeech.com/

American Speech-Language Hearing Association
http://www.asha.org/public/speech/disorders/HuntingtonsDisease.htm

Eating and Swallowing Difficulties in Huntington Disease Huntington’s New South Wales
http://www.huntingtonsnsw.org.au/sites/default/files/Eating%20and%20Swallowing%20Difficulties%20April%202012.pdf

National Foundation of Swallowing Disorders
http://swallowingdisorderfoundation.com/

Swallowing Difficulty and Huntington’s Disease (describes the nature of the difficulty thoroughly)
http://hddrugworks.org/index.php?option=com_content&task=view&id=338

Speech and swallowing disorders in Chorea
http://www.movementdisorders.org/MDS/News/Online-Web-Edition/Archived-Editions/Speech-and-swallowing-disorders-in-Chorea.htm

Vision

Understanding vision change in aging HD patients
https://hdsanctuary.wordpress.com/2014/04/26/understanding-vision-change-in-aging-hd-patients/

Symptomatic information in other languages

Sintomas (in Portuguese)
http://www.huntington-portugal.com/sintomas-e-fases-da-dh

SINTOMATOLOGIA, Estagios, Diagnostico (in Portuguese)
http://www.abh.org.br/index.php?option=com_content&view=article&id=61&Itemid=59

Kliniske retningslinjer for fysioterapi ved Huntingtons Sygdom (Dansk)
http://www.euro-hd.net/html/disease/huntington/interesting/final-danish-physiotherapy-guideline-october-2013.pdf

Problemas de conducta en la Enfermedad de Huntington una guía practica para individuos, familias yprofesionales que conviven conla EH
Dra. Jane S. Paulsen
Asociación Corea de Huntington Española
http://www.hdsa.org/images/content/1/2/12748.pdf



HD drugs in the pipeline

HDSA Therapies in the pipeline
http://www.hdsa.org/research/therapies-in-pipeline.html

Re-worked tetrabenazine
http://en.hdbuzz.net/184

Auspex Pharmaceuticals
http://www.auspexpharma.com/pipeline/


HD research organizations

BeHEARD (Helping Empower and Accelerate Research Discoveries)
BeHEARD 2015 challenge, a science competition aiming to accelerate personalized rare disease research.
http://beheard2015.raregenomics.org/home

CHDI Foundation
http://chdifoundation.org/about-us/

Fundación HD Lorena Scarafiocca
(Argentinian Foundation promoting HD research)
http://www.fundacionhd.org.ar

HDSA 2014 Research Investor’s Report
http://www.hdsa.org/images/content/2/5/v2/25359/HD-RsrchInvstRpt2014final.pdf

Jan Nolta Lab in the UC Davis Medical Center
Institute for Regenerative Cures
http://www.jannolta.com/

Rare Genomics Institute
http://www.raregenomics.org
(Helps custom design research projects. RGI connects patients to research institutions and assists with logistics and fundraising, but does not provide medical advice.)

The Huntington Study Group (HSG)
http://www.huntington-study-group.org/

The International Parkinson and Movement Disorder Society
http:/www.movementdisorders.org/MDS/About/Who-We-Are/Purpose-Mission–Goals.htm

UCL Huntington’s Disease Clinical Research (London)
http://hdresearch.ucl.ac.uk/


HD awareness/advocacy/fundraising groups and Government Assistance

HD awareness/advocacy/fundraising groups

@HDAwareness on Twitter
Your awareness? The Power. A public list by HDAwareness
https://twitter.com/HDAwareness/lists/your-awareness-the-power

30th Annual HDSA National Convention Dallas, Texas
http://www.hdsa.org/living-with-huntingtons/national-convention/index.html

Age UK (can possibly assist with HD)
http://www.ageuk.org.uk/

Amazon Smile Program: choose an HD non-profit
smile.amazon.com

Caring Voice Coalition
http://www.caringvoice.org/

CHDI Foundation
http://chdifoundation.org/

EURORDIS (63 countries patient-driven site for rare diseases)
http://www.eurordis.org/

European Huntington’s Disease Network (Several languages)
http://www.euro-hd.net/html/network

European Huntington’s Disease Network Contact (Several languages)
http://www.euro-hd.net/html/network/communication/contact

EveryLife Foundation for Rare Diseases
http://everylifefoundation.org/

Faces of HD
https://m.facebook.com/facesofhd

FasterCures
http://www.fastercures.org/

Fundación HD Lorena Scarafiocca
(Argentinian Foundation promoting HD research)
http://www.fundacionhd.org.ar

HD Pie in the Face Challenge – Huntington’s disease – Worldwide challenge during May Purple=JHD Blue=HD
https://www.facebook.com/HDpieinthefacechallenge?ref=aymt_homepage_panel

HD Reach (serving North Carolina)
hdreach.org

Help4hd International
http://www.help4hd-international.org/

Help 4 HD Magazine
http://issuu.com/help4hd/docs/sympo-8-1-2014__final_/1?e=5287924/8823289

Juvenile Huntington’s Disease Walk
http://heyevent.com/event/757324794355750/juvenile-huntingtons-disease-walk

Help 4 HD International-The Wilderness Kids Firewood Project
http://www.help4hd-international.org/WildernessKids.html

Help 4 HD International Relief Fund
http://www.help4hd-international.org/Help4HD-ReliefFund.html

Help Cure HD
http://helpcurehd.com/#ourmission

Help for HD Families NFP
http://helpforhdfamiliesnfp.org/

Help turn Chicago Blue for Huntington’s Disease
http://www.ipetitions.com/petition/help-turn-chicago-blue-for-huntingtons-disease

Hereditary Disease Foundation
http://www.hdfoundation.org/

Hoppy’s Hope to end Huntingtn’s Disease
http://www.hoppyshope.org/

Huntington’s Disease Advocacy Center
For HD families By HD families
http://www.hdac.org/
Huntington’s Disease Foundation
http://www.huntingtonsdiseasefoundation.org/

Huntington’s Disease Lighthouse Families
http://www.hdlf.org/

Huntington’s Queensland

http://www.huntingtonsqld.org.au/

Huntington’s Disease Resources
http://www.bandbacktogether.com/huntingtons-disease-resources/

Huntington’s Disease Society of America
HDSA.org

Huntington’s Disease Support Center
http://www.hdlf.org/phorum/list.php?5

Huntington’s Disease Youth Organization
hdyo.org

Huntington Society of Canada
http://www.huntingtonsociety.ca/

International Parkinson and Movement Disorder Society
http://www.movementdisorders.org/

The International Huntington Association
http://www.huntington-assoc.com/

Jeans for Genes Day
http://www.jeansforgenesday.org/

Lisa Genova’s HDSA donation page
http://lisagenova.com/donate-to-hdsa/

NIH: National Center for Advancing Translational Sciences
https://ncats.nih.gov/

Philly Cure HD Inc.
http://phillycurehd.org/

Project Breaking Point- for a Cure for HD
https://m.facebook.com/Projectbreakingpoint

Rare Disease Day- February 28
Rarediseaseday.us

Rare Disease Legislative Advocates
http://rareadvocates.org/

Read for HD
https://www.facebook.com/readforhd

Scottish Huntington’s Association
www.hdscotland.org/

Shana Verstegen
http://www.shanamartin.com/html/hd.htm

The Bev Hartig Huntington’s Disease Foundation
http://bevhartighuntingtonsdisease.com/donate/

“The Huntington’s Disease Film Project- Removing the Mask” by James Valvano
WeHaveAFace.org

“The Huntington’s Disease Project: Removing the Mask” Premier information‪Masquerade Celebration Bash! ‪(WeHaveAFace.org – The Huntingtons Disease Project)‬ https://vimeo.com/123507161

The Turner Together Foundation
A non-profit Trust providing assistance for people with HD.
https://www.facebook.com/TurnerTogether/timeline

Government Assistance (Social Care, Disability)

alphabetical by country

Canada

Government of Canada disability benefits (Canada)
http://www.canada.ca/en/services/benefits/disability/index.html

Services for people with disabilities (Canada)
http://www.faslink.org/Disability_Guide_ENG.pdf

Ireland

Citizens Information (Ireland)
http://www.citizensinformation.ie

UK

Care and support guide (UK)
http://www.nhs.uk/conditions/social-care-and-support-guide/Pages/what-is-social-care.aspx

Department of Health (UK) Care Act Fact Sheets
https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets/care-act-factsheets–2

Guidance National service framework: long term conditions From:Department of Health (UK)
https://www.gov.uk/government/publications/quality-standards-for-supporting-people-with-long-term-conditions

US

Accessibility Help (US)
http://www.ssa.gov/accessibility/

Administration on Aging (AoA) – US Dept. of Health and Human Services
National Family Caregiver Support Program
http://www.aoa.gov/aoa_programs/hcltc/caregiver/index.aspx

Benefits For People With Disabilities (US)
http://www.ssa.gov/disability/

Benefits listed by state (US)
http://www.benefits.gov/benefits/browse-by-category/category/MED

Caring Voice Coalition (US) Not a government agency. Helps obtain disability, helps find prescription discounts and more.
www.caringvoice.org/

Long Term Care – US Department of Health and Human Services
http://longtermcare.gov/

National Institute of Neurological Disorders and Stroke
NINDS Huntington’s Disease Information Page
Condensed from Huntington’s Disease: Hope Through Research
http://www.ninds.nih.gov/disorders/huntington/huntington.htm


Huntington’s Disease on the radio

 Weekly Shows

“Help 4 HD – The HD View”
http://www.blogtalkradio.com/help4hd

“Help 4 HD – The HD View”is an international, weekly radio program hosted by Melissa Biliardi. Tuesday nights from 6:30 pm to 7:30 pm (EST.) Visit station for archived episodes. Call-in numbers: 310-982-4227 or 877-497-4103

“Neuroactiva” is a Fundación HD Lorena Scarafiocca radio program (Argentina.) Todos los Lunes de 20 a 21 HS por vox 102.9 (Monday nights at 8pm, radio vox 102.9)
http://www.fmradiovox.com
fundacionhdlorena@gmail.com
“Neuroactiva” Podcasts at
http://www.ivoox.com/neuroactiva-13-abril-audios-mp3_rf_4350812_1.html
“Neuroactiva”Facebook profile
https://m.facebook.com/profile.php?id=1374356512848719

Single Episodes

“Mind Matters” RTE Radio show episode “On Huntington’s Disease” by Ella McSweeny (Ireland)
http://www.rte.ie/radio1/podcast/podcast_mindmatters.xml

“This American Life” Episode 492: “Dr. Gilmer and Mr. Hyde”
http://www.thisamericanlife.org/radio-archives/episode/492/transcript

“This American Life” Episode 509: “What are you doing for the test of your life?”
http://www.thisamericanlife.org/radio-archives/episode/509/it-says-so-right-here?act=2


Huntington’s Disease in the news

The Huntington’s Post online newspaper (check regularly for new stories)
http://www.thehuntingtonspost.org/

HuntingtonsRR (top HD news stories from last 48 hours)
bit.ly/1GiYqjN

Recent HD-related articles

“Treating Huntington’s Disease Patients” NJTV NEWS July 16,2015
http://video.pbs.org/video/2365529462/

“President Obama speaks to Davy Crockett” CNN
https://youtu.be/aXzOwv22Cps

“Dancing with Death: How the Director of Huntington’s Dance Documented His Own Suicide Attempt” by Gene Furbee June 22, 2015
http://www.moviemaker.com/archives/moviemaking/other/documentary/dancing-with-death-huntingtons-dance-director-documented-his-own-suicide-attempt/

“What It’s Like To Face The Threat Of Huntington’s Disease” The Huffington Post by Alena Hall June 1, 2015
http://www.huffingtonpost.com/2015/06/01/huntingtons-disease-facts_n_7485812.html

“Seeking support: Huntington’s sufferers form group to educate, comfort”
http://kokomoperspective.com/kp/seeking-support/article_30529aaa-0eb6-11e5-8c4e-63ca4c48e746.html

“Comprehensive Huntington’s Disease Clinic Opens at Northwestern Medicine” CHICAGO, May 14, 2015
http://www.prnewswire.com/news-releases/comprehensive-huntingtons-disease-clinic-opens-at-northwestern-medicine-300083587.html

‘My journey with hospice has come full circle’ May 11, 2015
http://www.grimsbytelegraph.co.uk/journey-hospice-come-circle/story-26474500-detail/story.html#ixzz3a7Q2I2f3

“RNC Officer Raising Huntington’s Awareness After Wife’s Diagnosis” May 11 2015
http://vocm.com/newsarticle.asp?mn=2&id=54615&latest=1

“Student to manage mother’s finances” May 11, 2015
http://www.newmarketjournal.co.uk/news/regional/student-to-manage-mother-s-finances-1-6736674

“Formerly ‘bittersweet,’ Mother’s Day takes on a new meaning for Shana Verstegen” May 10, 2015 by Gayle Worland Wisc News
http://www.wiscnews.com/lifestyles/parenting/article_12e13794-c4cc-5921-9c33-d68dbde839d9.html

“NuevaCare Introduces MnemeTherapy® Approach to Care for Elderly Patients with Alzheimer’s, Stroke and Other Types of Neurodegenerative Conditions”
http://www.benzinga.com/pressreleases/15/05/p5469733/nuevacare-introduces-mnemetherapy-approach-to-care-for-elderly-patients#ixzz3Z5DfcvWs

Video Postcard from 2015 HD Therapeutics Conference April 29, 2015
http://chdifoundation.org/

“Teva ‘Delivers Solid Quarter’ But Mylan ‘Might Not Represent Answer’” by Ben Levisohn April 30, 2015
http://blogs.barrons.com/stockstowatchtoday/2015/04/30/teva-delivers-solid-quarter-but-mylan-might-not-represent-answer/

“Baseball Backs HD Research” by WSU Athletic Media Relations April 30,2015
http://www.wsuraiders.com/ViewArticle.dbml?DB_OEM_ID=27000&ATCLID=210058588

“Raptor Pharmaceutical to Hold First Quarter 2015 Financial Results Conference Call and Webcast on Thursday, May 7, 2015 at 4:30 p.m. EDT”
http://money.cnn.com/news/newsfeeds/articles/globenewswire/10131709.htm

Neurocrine Biosciences Reports First Quarter 2015 Results Apr 30, 2015 http://www.marketwatch.com/story/neurocrine-biosciences-reports-first-quarter-2015-results-2015-04-30

“Tracing the steps of mental health, care in Coquitlam” by Janis Warren
http://www.tricitynews.com/community/301932031.html

“The Devastating Effects Of Huntington’s Disease” by Rebecca Dell
http://www.insidecolumbia.net/May-2015/The-Devastating-Effects-Of-Huntingtons-Disease/
“Gene-modified mesenchymal stem cells as a potential treatment for Huntington’s disease: preparing for a planned Phase I clinical trial” April 29, 2015
http://www.newshd.net/articles/7170/gene-modified-mesenchymal-stem-cells-as-a-potential-treatment-for-huntingtons-disease-preparing-for-a-planned-phase-i-clinical-trial/

“Indian Land resident on transplant list faces huge medical bills” by Amanda Harris Fort Mill Times APRIL 29, 2015 (Caring Voice Coalition assists HD patients as well-Sarah)
http://www.heraldonline.com/news/local/community/fort-mill-times/article19884651.html#storylink=cpy

“A Mind In Quicksand – Life With Huntington’s premieres on WTTW-11 May 3” Windy City Times April 29, 2015
http://www.windycitymediagroup.com/lgbt/A-Mind-In-Quicksand–Life-With-Huntingtons-premieres-on-WTTW-11-May-3-/51330.html

“Want to grow medical pot in NY? Pony up $210,000 and fill out application”  by James T. Mulder April 28, 2015
http://www.syracuse.com/health/index.ssf/2015/04/pot_1.html

“Jewish Blind and Disabled: Home Sweet Home” April 28, 2015
http://www.jewishnews.co.uk/jewish-blind-and-disabled-home-sweet-home/

“PBT2 Recommended for Orphan Designation in Europe” April 27, 2015
http://www.marketwatch.com/story/pbt2-recommended-for-orphan-designation-in-europe-2015-04-27

“Loving brother to run Nidderdale Way for Huntington’s disease” by Dan Windham April 27, 2015
http://www.harrogateadvertiser.co.uk/news/local/loving-brother-to-run-nidderdale-way-for-huntington-s-disease-1-7225704

“BioTime’s Clinical Grade Stem Cells From Subsidiary ES Cell International to Be Used in Planned CIRM-Funded Preclinical Studies of Huntington’s Disease”
April 27, 2015
http://www.businesswire.com/news/home/20150427005320/en/BioTime%E2%80%99s-Clinical-Grade-Stem-Cells-Subsidiary-ES#.VUDmsiFViko

HEALTH: “Playwright’s dramatic response to news of disease in family” by TOM FOOT, April 24, 2015 The West End Extra
http://www.westendextra.com/news/2015/apr/health-playwright%E2%80%99s-dramatic-response-news-disease-family

“Suven Gets Patents for Neuro-Degenerative Disorder Drug” – Press Trust of India April 24, 2015
http://profit.ndtv.com/news/corporates/article-suven-gets-patents-for-neuro-degenerative-disorder-drug-757903

“Thoughts From a Recent Trip to Tulsa’s Woody Guthrie Center”by John English Flagpole April 22,2015
http://flagpole.com/arts-culture/arts-culture-features/2015/04/22/thoughts-from-a-trip-to-tulsa-s-woody-guthrie-center

“Local nonprofit raises awareness and hope of rare disease through events” by WATE 6 On Your Side Staff April 21, 2015
http://wate.com/2015/04/21/local-nonprofit-raises-awareness-and-hope-of-rare-disease-through-events/

“Disease impact set for display” The Telegraph and Argus
http://www.thetelegraphandargus.co.uk/news/local/localbrad/12904973.Disease_impact_set_for_display/

“Dress to impress at fundraiser to remember Hartlepool teenager” April 17,2015
http://www.hartlepoolmail.co.uk/news/dress-to-impress-at-fundraiser-to-remember-hartlepool-teenager-1-7215451

“After Unanimous House Support, ‘Right To Try Act’ Could Be Close To Heading To Senate Floor” by Sascha Cordner, WFSU April 17, 2015
http://news.wfsu.org/post/after-unanimous-house-support-right-try-act-could-be-close-heading-senate-floor

(James Davy Crockett) “Famous name among Tennessee’s uninsured” by Tom Wilemon, April 16, 2015
http://www.tennessean.com/story/news/health/2015/04/16/famous-name-among-tennessees-uninsured/25907627/

“Stirling Launch UK’s First Huntington’s Disease Care Qualification”April 16, 2015 by the editorial team
http://www.careappointments.co.uk/education-training/item/36971-stirling-launch-uk-s-first-huntington-s-disease-care-qualification

“How a UBC researcher helped Lisa Genova write her latest book” April 16, 2015 University of British Columbia
http://news.ubc.ca/2015/04/16/how-a-ubc-researcher-helped-lisa-genova-write-her-latest-book/

“Arlo Guthrie Brings His Alice’s Restaurant 50th Anniversary Tour to Berkeley” April 16, 2015
http://alumni.berkeley.edu/california-magazine/just-in/2015-04-16/arlo-guthrie-brings-his-alices-restaurant-50th-anniversary

“Scary future for kids in Huntington’s trap” by Katie Hamson April 15, 2015 The West Australian
http://health.thewest.com.au/news/1927/scary-future-for-kids-in-huntingtons-trap

“Waiting for Huntington’s fate” by Katie Hampson April 15, 2015
http://health.thewest.com.au/news/1928/waiting-for-huntingtons-fate?hc_location=ufi
8054497

“Maher family sets benefit dinner” New Milford Spectrum April 15, 2015
http://www.newmilfordspectrum.com/news/article/Maher-family-sets-benefit-dinner-6202204.php

“Q+A: ‘Twitch’ documentarian talks film’s overseas reception” April 2, 2015 by Angelique Dakkak The Stanford Daily
http://www.stanforddaily.com/2015/04/02/qa-twitch-documentarian-talks-films-overseas-reception/

“The Cold Reality That’s Set In After Last Year’s Ice Bucket Challenge” by Dawn Q. Landau April 13, 2015
http://www.huffingtonpost.com/dawn-q-landau/ice-bucket-challenge-cold-reality_b_7015414.html

“U OF T ENGINEERS TACKLE TORONTO PROBLEMS”by Anthony Burton April 13, 2015
See photo inside: First-year U of T engineers show off their arm guard, designed to reduce essential tremor in sufferers of Huntington’s disease.
https://nowtoronto.com/news/u-of-t-students-attempt-to-solve-torontos-worst-challenges/

“Hundreds rally to save Greystone” April 12, 2015
http://parsippanyfocus.com/2015/04/12/hundreds-rally-to-save-greystone/

“Engaging a ‘scared population’ of Huntington’s disease families by respecting their journeys” by Gene Veritas April 7, 2015
http://curehd.blogspot.com/2015/04/engaging-scared-population-of.html

“‘DAMN SCARY:’ A test will tell Bulldog Jake Dowell if he has Huntington’s disease  by Teri Pecoskie March 18, 2015
http://m.thespec.com/sports-story/5481838–damn-scary-a-test-will-tell-bulldog-jake-dowell-if-he-has-huntington-s-disease/?

Column: “Angels’ Joe Smith is not nearly as common as his name” by Bill Dwyre March 8, 2015
http://www.latimes.com/sports/angels/la-sp-joe-smith-dwyre-20150309-column.html

“The Amazing Cameron Brown” March 20, 2015
http://www.thehuntingtonspost.org/SharonMT4

“‘Inside’ 
scoop: ‘Still Alice’ author examines 
lesser-known disease in new novel” March 18, 2015 http://tinyurl.com/m28g9rq

“Senator Jim Cowan fights for genetic discrimination to be illegal” March 5, 2015
http://www.cbc.ca/radio/thecurrent/the-current-for-march-5-2015-1.2982500/senator-jim-cowan-fights-for-genetic-discrimination-to-be-illegal-1.2982549

“Meet the little girl who’s been ‘designed’ to help beat Huntington’s disease” March 1, 2015
http://www.telegraph.co.uk/news/science/11442926/Meet-the-little-girl-whos-been-designed-to-help-beat-Huntingtons-disease.html

“Stem Cells: A weapon for Huntington’s Disease?”
http://abc30.com/health/stem-cells-a-weapon-for-huntingtons-disease/539267/ in the news by Margot Kim, February 28, 2015

“A final wish fulfilled” February, 22, 2015
http://www.app.com/videos/news/local/jackson-lakewood/lakewood/2015/02/22/23842445/

“Fraternity organizes HD charity walk” February 22, 2015
http://thebrownandwhite.com/2015/02/22/delta-upsilon-fraternity-organizes-huntingtons-charity-walk-honor-members-father/

“Advocate fights for new Huntington’s Disease legislation in mother’s memory” October 16, 2014
http://www.foxnews.com/health/2014/10/06/advocate-fights-for-new-huntingtons-disease-legislation-in-mothers-memory/

“‘Bikin’ the Dixie Highway’ — Ride from Sault to Louisville to raise funds to combat Huntington’s Disease” May 30, 2014
http://www.sooeveningnews.com/article/20140530/News/140539976

“Genetic testing and disease: Would you want to know?” by Janice Lloyd USA TODAY Updated 4/23/2012
http://bit.ly/usatodaygenetics

“To The Horrible Disease That Turned A 19-Year-Old Into A Caregiver” April 1, 2015
https://www.yahoo.com/health/to-the-horrible-disease-that-turned-a-19-year-old-115032696398.html

For older articles, visit the News Archives! 

HD friends in need

Cure Huntington’s Disease – The Fred Maher’s Family Journey
Donations sent directly to UCONN Medical Health Center for research.
http://www.gofundme.com/gu8f0

DOWN WITH HUNTINGTONS for Darleen
donations to Hdsa Research Initiatives Inc
TAX ID: 201106873
New York NY USA
http://www.gofundme.com/ktzvms

Friends of Bobby- Huntington’s Disease Support
https://fundrazr.com/campaigns/boEca

Goals before too sick HUNTINGTONS!
http://www.gofundme.com/tuphse6

“HD-Needs!”(If you have a need)
http://www.help4hd-international.org/HD-Needs.html

HDSA Convention Scholarship Opportunities
http://www.hdsa.org/living-with-huntingtons/national-convention/financial-aid/index.html

HDSA National Youth Alliance Scholarships: to contribute to the NYA scholarship fund
Mail your check or money order, payable to the “HDSA NYA Convention Scholarship Fund” to:
Huntington’s Disease Society of America
505 Eighth Avenue, Suite 902
New York, NY 10018
Attention: Mynelly Perez, NYA

Help4HD JHD Kids Walk
http://www.firstgiving.com/help4hd/jhd-kids-walk

Help 4 JHD | Facebook PayPal link for JHD Walk
https://www.facebook.com/help4jhd

Help! Homeless HUNTINGTONS person!
http://www.gofundme.com/s64j2s

Help me smile again. Linn Eaton
http://www.gofundme.com/ot5jn8

Hope for Daylan-Huntington’s Disease
http://www.gofundme.com/74egjo

Huntington’s Disease Awareness
http://www.gofundme.com/wehaveaface

Huntington’s disease research
http://www.gofundme.com/khzu98

I want to see Africa before I die. Amanda Rupert
http://www.gofundme.com/d133u0

JHD Kids page: scroll down to see JHD families in need
http://jhdkids.com/

Judy’s house
http://www.gofundme.com/jpuqno

lugert acres by Brittany Lugert
http://www.gofundme.com/lugertacres

MCWILLIAMS TEAM HOPE
Cleveland, OH Team Hope Walk & 5K Run
http://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.teamParticipants&teamID=5130
NYA Day is held the Thursday prior to the start of HDSA’s National Convention.
Date: NYA Day Thursday, June 25th, 2015

Quest For A Cure by MaryAnn Emerick
http://www.gofundme.com/cjvezo

Rodino Family Miracle Chain of Love
http://www.gofundme.com/lhfwqg

Sarah Kernahan’s fundraising page
Scottish Huntington’s Association
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=SarahKernahan

Twitch Goes to Australia
https://www.indiegogo.com/projects/twitch-goes-to-australia

Vicki Owen’s fundraising page.
http://www.firstgiving.com/fundraiser/vickiowen/iacp-2015

Huntington’s Disease poems

Smiley Bonds

Smiley Bonds

“raining hope” Offical video written and performed by Smiley Bonds
https://youtu.be/m-sEIXalA7s

Martha Bonds, Smiley's mother, died from HD when he was 13.

Martha Bonds, Smiley’s mother, died from HD when he was 13.

“raining hope,” a collection of poems by Smiley Bonds, is available on Amazon.com

“raining hope” by Smiley Bonds

I know you tired
I see the pain in your eyes
The regret weighing on your heart
The fear of the what could bes and an uncertain future clouds your mind
Your fractured smile hiding behind your tough exterior
But its okay, I know how you feel
Because I have that same pain I try to hide
but god gave the foresight to pierce beyond your tough exterior
and see your warm feelings within
My father in heaven gave me the power to pour out your pain onto this blood soaked pen and paper
that’s why I hope that my words will be powerful enough
to send away the dark days of sadness past,
and those cold lonely nights when you cried out for help,
but no one seems to answer.
But god is always there, listening and watching over you
That’s why he gave us free will to be a test.
But I see what he sees,
we weep…..
for those who sleep outside in cold,
For those who have lost themselves and sell their bodies for money,
for those who have lost someone important to them,
for those afflicted by their mind’s will,
and for those who have nowhere to go because their parents don’t want anything to do with them,
that’s why he made me to help him on earth
To save the world from its sorrows that’s why everything he’s done in my life from mama dying
and being diagnosed with Huntington’s and hiv
and to me graduating from culinary school
it was all a test to make me strong enough to take on your pain
and carry it for the world
the words from my poetry will rain down and quench your thirst for hope

Taken from the book – “Curse in Verse and Much More Worse” – By Trish Dainton

“For Steve”

Your struggle is now over,
You fought it to the end.
I’m sorry my dear darling,
HD I could not mend.

You kept your grace and dignity,
A man so sweet and kind.
The Steve I knew and loved so much,
Was never left behind

It tried to break your spirit,
This thing they call HD,
But never did I hear those words,
“Why did it choose me?”

And in the end, with mercy shown,
Your dignity in death;
God never let you die alone,
I witnessed your last breath.

Taken from the book – “Curse in Verse and Much More Worse” – By Trish Dainton

“The Rushed Hush”

Please speak to me, I am not deaf;
Please show me flowers, I am not blind.
Please take the time to listen more;
I simply have a slower mind.

Please stay with me a moment longer,
Your time’s precious, mines’ more so;
Please try to talk a little slower,
I get confused lest you talk slow.

Please give me time to think a while,
It doesn’t help when you cut in;
Please treasure silence, not fill void;
Please watch my lips till speech begins.

Please feed me love, it makes me stronger,
To fight this illness in my head;
Please care for me a little longer;
Your time is plenty, when I’m dead.

Taken from the book – “Curse in Verse and Much More Worse” – By Trish Dainton

“The OCD Plea”

Obsessive Compulsion Disorder;
Just another symptom we get.
The rituals we need, within our lives,
Particular needs to be met.

My partner just don’t understand it;
She thinks that I’m being a pain.
Doesn’t she care, that by placing that there,
I must start this all over again?

The socks go on after the trousers;
The shirt goes on after the shoes.
It’s not like she’ll die, if she doesn’t know why,
This particular order I use.

So why does she still go on moaning?
It’s not her who has this HD.
The rituals are my way of coping,
So why can’t she just let me be?

“Pretty Face” by Hayley Kay

Hayley Kay

Do you see the Pretty Face?
Do you know what I have?
Did you know it was Bound,
from the day I met my Dad?
I look pretty normal,
Brown eyes & Brown Hair.
I smile when I try
Deep down, I glare.
I look at this World.
The country I live.
To me it’s so selfish,
for those who don’t Give.
Those who aren’t giving
aren’t Fair, aren’t Living.
They don’t have the time,
To Stop and Care,
While I sit here and Cry, and joylessly Stare.
Tears are brought
With hopeless thoughts.
Why cant’ everyone be just like us?
Why can’t I live like my neighbor does?
with their Clean conscious, just Because
I’m different?… Did you know?
Could you tell by my Face?… Or Even my Glow?

Why can’t I have children, Plenty to Love.
Without a “big” family, I’m missing my Doves.
I’m missing the ones Who fly High, and Free,
I’m wanting those Ones, my Children, from Me.

Why can’t I help but lose my mind,
When I think about This, All the Time.
Our Dearest ones, should understand.
But they don’t, wont, and Can’t Comprehend.
You Won’t even Fathom my time on This Earth.
You couldn’t live with what I have learned.
You’re right by my side, In your own little mind.
I’m over here as I look at you Blind.

Your eyes don’t See the Pain I’m in.
Whether its visible, or deep down in my Skin.
You’ll never know the True Me.
Not even when we’re Buried deep.
To all of those Out there
That think they can Care,
Take a moment,
Stop..,And Stare.

Look at your loved one, Think what they think.
Are you even able to do that with
With your Mind Clogged like A Sink?
Could you really put yourself in you Loved one’s Shoes.
I Don’t believe you could, unless you Lived those Blues.
Next time you Have that urge, the urge to Open your mouth.,
The urge to Bash and Argue, or even lay Oneself out.

Listen. Breathe. We only Live Once.
Give us that Chance, our Moment to touch.
We need reality, and so do you
Stop living in Darkness, and let us Bloom.

“A Poem of Huntington’s Disease” by Amanda Kell 2010

Contained in my broken mind
Unable to show you I care
Full of broken thoughts
That I cannot repair.

I see you come in
And I see you cry
Unable to hold you
Though I Try and try.

My body does not respond
The way I want it to
Shifting and twitching
Simply tormenting you.

Trapped in this body
Confined to this bed
I can only stare at you blankly
Pushing the thoughts in my head.

I try to push them out
I try to make you see
I try to communicate
Just how much you mean to me.

I hear your words
And I try to understand
My heart aches so extraordinarily
Just to hold your hand.

I love you so much, my darling
These emotions are truly in my soul
But you cannot see any of it
Because I have no control.

You get up to leave
And the heartache begins
For who knows how long
Till I see you again.

But please do not feel guilty
For there is nothing you can do
Do not dwell on this tragedy
I know it is difficult for you.

Please remember me clearly
As I was before
Free to run and embrace
All the ones I adore.

Because my love runs deep for you
And will always remain
I will always be with you
And will know you again.

This sickness cannot take away
My feelings deep inside
My memories will come back to me
When I cross to the other side

For now be strong, my love
I know it is hard to bear
To see me contained in my broken mind
Unable to show you I care.

Faces of Huntington’s  – May 1, 1998
by Carmen Leal-Pock (collection of stories, essays and poems)

(Untitled) by Shelli Major

Is it hard to watch me stumble, are u afraid in case i fall. Is this even a problem? Do u ever visit me or call? Its said that ignorance is bliss! I think this is very true. Are you scared of what to say? Unsure of what to do? So many things have happened that you simply didn’t see. Too much for YOU to handle? How’d you think it is for me? The world is still revolving and time is passing by. Have you earned the right to ‘ think’ of me? To let a tear fall from your eye? Its not that you are needed, I have so many that show they care. But if u were in my shoes right now. Who would you want to be there? I have strength beyond your dreams,      I have spirit that can’t be broken.  When did you last see me? How long since we have spoken. This isn’t written as a plea, that’s not what is intended..   But how much time  has passed by now and can the void ever be mended? 

“I Just Want… to be Me” by Crystal Zachary
http://timehop.com/c/fs:10202211837911407:10203953437730314:13105877:6dd8c

Songs about Huntington’s Disease

“Cure” by Taryn Reneau
https://youtu.be/mSbwfV37lfA

“Moma’s Box of Memories”
Vocals performed by demo singer: Rachel Williams
Song produced by: Kim Copeland Productions at Ragtop Studios
Songwriter: Michelle Lea Brumble
http://youtu.be/IdiT7aGGo-k

HD Stories and Poems collected and shared by Renetta Davis

THANK YOU: Renetta Davis has a website like this one,  except that hers has been around longer and has an inimitable richness of character. http://www.renettedavis.com

She has shared them with this site. Click the menu tab bearing her name to access this great collection.


Huntington’s Disease visual art/graphic art

Huntington’s disease (HD/JHD)
https://www.pinterest.com/pepperpell/huntingtons-disease-hdjhd/

We Wear Blue & Purple – Huntington’s Disease Awareness
https://m.facebook.com/Wewearblueandpurple


Huntington’s Disease blogs

A Survivor’s Guide to Huntington’s Disease? blog
http://survivinghuntingtons.blogspot.com/

A Year of Gratitude
http://ayearofgratitude2015.blogspot.co.uk/

At Risk for Huntington’s Disease
curehd.blogspot.com/

Bev Hartig’s Blog
http://bevhartighuntingtonsdisease.com/blog/

DNA SCIENCE BLOG by Ricki Lewis
http://blogs.plos.org/dnascience/

Empowerhd
https://empowerhd.wordpress.com/

FasterCures Blogs
http://fastercures.tumblr.com/

hdscienceblog.com
http://hdscienceblog.com/

HD Sanctuary
https://hdsanctuary.wordpress.com

HD The Journal
http://hdthejournal.blogspot.com/

Huntington’s Disease- A curse yet a blessing in disguise…
https://happyhuntingtonsday.wordpress.com/

Jaceys Hope Faith and Love ~ My Story
https://jaceyshopefaithandlove.wordpress.com/

Jess Writes With Crayons
https://katiebluecrayons.wordpress.com

Let’s Cure Huntington’s Disease!
http://judygalasek.blogspot.com/

Life with Huntington’s
http://huntingtonswontrulemylife.blogspot.com/

Living with Huntington’s Disease
http://lwhd1.blogspot.com/

Living with Passion
http://www.livingwithpassion90.blogspot.com/

Matt Ward in HD (Video Diary)
follow Matt Ward on http://www.youtube.com/

Me and HD
https://meandhd.wordpress.com/

My HD story
https://myhdstory.wordpress.com/

One Foot In Front of the Other
http://deborah-onefootinfrontoftheother.blogspot.com/

Our IVF and PGD Journey
http://mrspollygarrett.blogspot.co.uk/

Politywonk
https://politywonk.wordpress.com/category/huntingtons-disease/

Rotten Apples and Eating Around the Bugs
https://cat4acure4hd.wordpress.com

Support for the Huntington’s Disease Community
http://joannehdcare.blogspot.com/

TALES FROM THE MOTHERLAND
http://talesfromthemotherland.me/

The Huntingtons Chronicles
https://thehuntingtonschronicles.wordpress.com/

THE STEM CELLAR
The Official Blog of CIRM, California’s Stem Cell Agency
http://blog.cirm.ca.gov/

Huntington’s Disease visual art/graphic art

We Wear Blue & Purple – Huntington’s Disease Awareness
https://m.facebook.com/Wewearblueandpurple


Huntington’s Disease short films and documentaries

“50/50: A Huntington’s Disease Documentary” “50/50,” LEVINSON/FONTANA COMPANY (W/D/P)
Starring Andrea Anders and Shana Martin

“A Mind in Quicksand Life with Huntington’s” directed by Kim Lile

“A Huntington’s Story” by Angela Edwards produced for the William F. Connell School of Nursing at Boston College
http://youtu.be/-s6h-JuYHEE

“Alice’s Restaurant” by Arlo Guthrie

“Alive & Well | a Huntington Disease Disorder Documentary”
www.aliveandwellthefilm.com/

“Do You Really Want to Know?” by John Zaritsky
www.doyoureallywanttoknowfilm.com/the-film/

“Father Spirit – a documentary” by Vikram Bhandari
www.fatherspirit.com

Felix Austria!
felixaustriafilm.com

“HUNTINGTON’S DANCE”
http://hdance.mfurbee.com/

“Near Silence” by Ana De Lara
http://www.nsi-canada.ca/2014/02/near-silence/

“On Your Mark, Get Set, Mow!”
http://mowermovie.com/

“Project breaking point” videos
https://www.facebook.com/Projectbreakingpoint/videos/1020186547993541/
https://www.facebook.com/events/1498164413809102/

“The Huntington’s Disease Film Project- Removing the Mask” by James Valvano
WeHaveAFace.org

The Inheritance Documentary
theinheritancedocumentary.com

“The Lion’s Mouth Opens” by Lucy Walker
http://www.lucywalkerfilm.com/THE-LION-S-MOUTH-OPENS

“The Octopus – a full length film”
http://youtu.be/u11XMQ633mA

“Twitch: A Documentary”
twitchdocumentary.com/


Non-fiction books and/or memoirs involving Huntington’s Disease

“An Affair Worth Remembering With Huntington’s Disease,
Incurable Love & Intimacy During an Incurable Illness” by Debbie Pausig. www.debbiepausigmft.com

“Blood Brother: The gene that rocked my family” by Mona Gable

“Breathless: An Inward Journey”  by C. Everette Hagler

“Crossroads” by Nick O’Donohoe

“Curse in Verse and Much More Worse” by Trish Dainton
http://www.amazon.com/Curse-Verse-Much-More-Worse-ebook/dp/B0064TKHLS

“HUNTINGTONS DISEASE…DESTROYED MY FUTURE” by neville, a

“Hummingbird: A heart-felt account of one woman’s emotional journey through life – from loss, fear and risk to self-discovery and joy” by Deborah Goodman

“Hurry Up and Wait! A Cognitive Care Companion Huntington’s Disease in the Middle and More Advanced Years” by James Pollard

“It’s a Bird” by Steven T. Seagle

“Just Move Forward: The Simple Truth About Living with Huntington’s Disease” by Susan E. Lawrence

“Learning to Live with Huntington’s Disease: One Family’s Story” by Sandy Sulaiman and Danny Dourado
“Life Interrupted” Sharon McClellan Thomason, Ed.

“Mapping Fate: A Memoir of Family, Risk, and Genetic Research” by Alice Wexler

“Me and HD” volume 1 by Sarah Foster

“Never Ending Dance” by G. Jean Smith

“The Selfish Pig’s Guide To Caring: How to Cope With the Emotional and Practical Aspects of Caring for Someone” by Hugh Marriott

“The Test: Living in the Shadow of Huntington’s Disease” by Jean Barema

“Woody Guthrie: A Life” by Joe Klein


Personal stories from HD families

Faith and Huntington’s Disease
http://youtu.be/GLuAlauDB2E

Genetic Heartache: Huntington’s Disease by Maryellen Evers
http://youtu.be/jy1gkL_B2UQ

HDYO Educational videos
http://en.hdyo.org/eve/videos

HDYO’s You Tube channel includes plenty of educational and informative videos for people of all ages.
http://www.youtube.com/user/HDYOFeed/videos

Hopesvideo’s You Tube channel includes over 200 popular HD videos
http://www.youtube.com/channel/UCcBiGYksL4iWyfiUlk-4dZA

Huntington’s Disease, Genetics by kedlax7
http://youtu.be/S6o2-BgKgOo

Huntington’s Disease- My father Ed by Angela Mabry
http://youtu.be/TLmSAP5p8jY

“Jackie Harrison:€“ my thoughts on being a sibling carer”
http://www.carersuk.org/news-and-campaigns/features/jackie-harrison-my-thoughts-on-being-a-sibling-carer

Meghan’s Story by Kayla Ayres
http://youtu.be/FAR_TjmZ5YM

My mommy days for Huntington’s disease took her life! :,( by Shelly Casey
http://youtu.be/hZrkxcxhz-k

My Story- Huntingtons and Me by Jeana Schreiber
http://youtu.be/XPC7cHyNv74

Success story
http://youtu.be/ljpE2bY86N0

The decision to get tested for huntingtons disease by Michelle Ehrgott
https://youtu.be/13xHdk7kJ5Y

The journey of getting tested for huntingtons by Michelle Ehrgott
https://youtu.be/f7Njt3Ppq3M

The journey for getting tested for huntingtons 2 by Michelle Ehrgott
https://youtu.be/N1Ipsn0tdQQ

The journey for getting tested for huntingtons 3 by Michelle Ehrgott
https://youtu.be/WZKDOnuAC94

Tina’s Videos
https://www.youtube.com/user/abjr2010/videos


Fictional depictions of Huntington’s Disease in the movies

Neurological disorders in the movies
https://neurologicaldisordersinthemovies.wordpress.com/huntingtons-disease/

Examination of history of HD in film and television. The CHDI 2009 Keynote address in Cannes, France by Julie.
https://vimeo.com/4623378

“The Score”
http://www.thescorethemovie.com/

Fictional depictions of Huntington’s Disease in books

“A Partial History of Lost Causes: A Novel” by Jennifer Dubois

“A Weekend Getaway” by Karen Lenfestey

“Afraid, a Book for Children “at risk” for Huntington’s Disease” by Michelle Thompson
http://c2bi.com/mt/booksafraid.html

“Ah, Sweet Life” by E. Adrian Dzahn

“Bittersweet Chocolate” by Martha Reynolds

“Calming the Storm” by Michelle Thompson

“Could I Have This Dance?” by Harry Kraus

“Daimler” by Pål Johan Karlsen

“Devil’s Dance” by Richard R. Karlen

“Double Helix” by Nancy Werlin

“Ferris Wheel” by Katie Jackson

“Five Days Left” by Julie Lawson Timmer

“For the Rest of My Life” by Harry Kraus

“Frameshift” by Robert J. Sawyer

“Galapagos” by Kurt Vonnegut

“If I Should Never Wake” by Jeanene Cooper

“Inside the O’Briens: A Novel” by Lisa Genova

“It’s Better to Laugh Than Cry” by Clarence Vos

“Moonlight Sonata” by David Madrigol

“Next Door Secrets” by Karen Lenfestey

“One To Tell The Grandkids” by Kristina M. Sanchez

“Return to Madison River” by Allen Andrew Cooper

“Saint Vitus’ Dance” by Jill Rubalcaba

“Saturday” by Ian McEwan

“Saving Jasey” by Diane Tullson

“Sisterhood Everlasting” by Ann Brashares

“Stem Cell Symphony” by Ricki Lewis, PhD

“Stoney Beck” by Jean Houghton-Beatty

“The Black Dog Bed and Breakfast” by Michael Marsden

“The Battle Cry” by David Mercer

“The Beadmaker” by Jessica Hemingway

“The Find” by Kathy Page

“The House of Stairs” by Ruth Rendell, writing as Barbara Vine

“The One With the Blue” by James Valvano

“The Wrong Way Home” by Liza Fosburgh

“Valley of the Dolls” by Jacqueline Susann

Fictional depictions of Huntington’s Disease on television

“All Saints” Australian medical drama. Dr. Samantha O’Hara.

“Breaking Bad” US series. Walter White shares that his father had HD.

“Earth: Final Conflict” by Gene Roddenberry. Characters in the episodes “Pad’ar” and “The Sins of the Father.”

“EastEnders” BBC series. David Collins, played by Dan Milne.

“ER” US series. The episode “Insurrection.”

“Everwood” US series. Hannah’s father in the episode “Need to Know.”

“Home And Away” Australian series. Edward Dunglass.

“House” US series. Dr. Remy “Thirteen” Hadley and her brother.

“Marcus Welby, M.D.” US series. Joseph Campanella in the episode “Dance to No Music.”

“The Messengers” US series. Father of Vera’s child breaks things off because he has HD.

“Private Practice” Angie Padgett from the episode “In Which Charlotte Goes Down the Rabbit Hole.”

“Revenge” The character of Conrad Grayson in the episode “Fear.”

“Royal Pains” Hank and Evan’s wealthy benefactor, Boris Keuster von Jurgens-Ratenicz, has a family history of a genetic disease which was most likely Huntington’s.

“Scrubs” US series. A woman is diagnosed with Huntington’s Disease and her son has to decide whether to test.

“The Bold Ones: The New Doctors” Dr. Paul Hunter counsels a pregnant woman whose irritable husband is found to have HD.

“The Mod Squad” Sammy Davis Jr. in the episode “Song of Willie.”

“Waterloo Road.” BBC series. One episode.

“Without a Trace” US series. The episode “Second Sight.”


Facebook support and awareness groups by subject

NOTE: Many support groups might require you to explain your affiliation with HD or require some other verification before you can join. This is to protect groups from scammers, salespeople and trolls.

BE JHD/HD AWARE!
https://www.facebook.com/groups/274610862746628/

Button Boys fighting Juvenile Huntington’s disease
https://www.facebook.com/ButtonBoys

Caring Voice Coalition
https://www.facebook.com/CaringVoiceCoalition

Curse in Verse & Much More Worse (HD & Caring for the Sharing)
https://www.facebook.com/groups/214260525274272/

Ethan’s Journey of Hope – Fighting Juvenile Huntington’s Disease
https://www.facebook.com/pages/Ethans-Journey-of-Hope-Fighting-Juvenile-Huntingtons-Disease/309403982540663?fref=nf

HD = Alta Definizione: Arts for Huntington’s Disease
https://www.facebook.com/pages/HD-Alta-Definizione-Arts-for-Huntingtons-Disease/209189774409

HD is not for me!
https://www.facebook.com/groups/198436453536564/

HD-day
https://www.facebook.com/groups/995617587124488/

hd family
https://www.facebook.com/groups/110795682317094/

HD/Family SUPPORT Group
https://www.facebook.com/groups/HD.Family.SUPPORT.Group/

HD is not for me!
https://www.facebook.com/groups/198436453536564/

HD NETWORK
https://www.facebook.com/groups/178526652164521/

HD Pie in the Face Challenge – Huntington’s disease page
https://www.facebook.com/HDpieinthefacechallenge

HD Reach
https://www.facebook.com/HDReach

HDSA’s National Youth Alliance
https://www.facebook.com/HDSANYA

Help4HD Awarness (sic)
https://www.facebook.com/groups/806144412791699/

Help4HD-International: “HD-Needs!”
https://www.facebook.com/groups/391845990960994/

“Help 4 HD – The HD View” – BlogTalkRadio
https://www.facebook.com/groups/Help4HD/

Help turn Chicago Blue for Huntington’s Disease
http://www.ipetitions.com/petition/help-turn-chicago-blue-for-huntingtons-disease

Hope 4 HD – Society/Culture Website
https://www.facebook.com/pages/Hope-4-HD/1504073429823648

Huntington’s … A Cure Means Hope
https://www.facebook.com/groups/204413069590681/

Huntington’s Disease
https://www.facebook.com/pages/Huntingtons-Disease/107319850836

Huntington’s Disease
https://www.facebook.com/pages/Huntingtons-Disease/209150529119086

Huntington’s disease
https://www.facebook.com/pages/Huntingtons-disease/124017691007936

Huntingtons Disease
https://www.facebook.com/pages/Huntingtons-Disease/135259383174288

Huntington’s Disease and Tina
https://www.facebook.com/pages/Huntingtons-Disease-and-Tina/183582008400156

Huntington’s disease awareness
https://www.facebook.com/pages/Huntingtons-disease-awareness/200223763407087?ref=br_rs

Huntingtons Disease Awareness Wristbands
https://www.facebook.com/HuntingtonsDiseaseAwarenessWristbands

Huntington’s Disease Caregiver Support
https://www.facebook.com/groups/1595650367334038/

Huntington’s Disease-Family is everything
https://www.facebook.com/pages/Huntingtons-Disease-Family-is-everything/126010630817704

Huntington’s Disease Foundation
https://www.facebook.com/HuntingtonsDiseaseFoundation

Huntington’s Disease fundraiser
https://www.facebook.com/pages/Huntingtons-Disease-fundraiser/213347672065467

Huntingtons Disease fund raising and support page
https://www.facebook.com/pages/Huntingtons-Disease-fund-raising-and-support-page/817743828278610

Huntingtons Disease fundrasing
https://www.facebook.com/pages/Huntingtons-Disease-fundrasing/222489791290328

Huntington’s Disease Health/Medical/Pharmaceuticals
https://www.facebook.com/www.hd.co.uk

Huntington’s disease “hunt for a cure foundation”
https://www.facebook.com/HDcure

Huntington’s Disease in historical newspapers
https://www.facebook.com/HuntingtonsDiseaseInHistory

Huntington Disease News
https://www.facebook.com/groups/1562776707322197/

Huntington’s Disease Obituaries
https://www.facebook.com/pages/Huntingtons-Disease-Obituaries/256037717799392

Huntington’s Disease Petitions
https://www.facebook.com/HuntingtonsPetitions

Huntington’s Disease Poetry
https://www.facebook.com/HuntingtonsDiseasePoetry

Huntingtons Disease Support
https://www.facebook.com/huntingtonsSupport

Huntington’s Disease Support Club
https://www.facebook.com/pages/Huntingtons-Disease-Support-Club/229737333709254?fref=ts

Huntington’s Disease Support Group
https://www.facebook.com/groups/165902300238342/

Huntington’s Disease Support – The Good, The Bad, and The Ugly
https://www.facebook.com/groups/406770452750893/

Huntington’s Disease Young Adults
https://www.facebook.com/groups/215085485263851/

Huntington’s Disease Youth Support Space
https://www.facebook.com/pages/Huntingtons-Disease-Youth-Support-Space/1423914061201854

Huntington/Juvenile Huntington Disease Awareness page
https://www.facebook.com/pages/HuntingtonJuvenile-Huntington-Disease-Awareness/748130815259912

Huntington/Juvenile Huntington Disease Caring Support Group
https://www.facebook.com/groups/438296032982132/

Huntingtons Proactive Group.
https://www.facebook.com/groups/456062871108389/

Ink for JHD & HD
https://www.facebook.com/pages/Ink-for-JHD-HD/743955708990100?fref=photo&sk=photos

Journal of Huntington’s Disease
https://www.facebook.com/journalhd

Living with Huntington’s Disease
https://www.facebook.com/pages/Living-with-Huntingtons-Disease/507563189305709

Men’s HD Caregiver Support Group
https://www.facebook.com/groups/1430645380596238/

“Neuroactiva”Facebook profile (Argentinian radio program)
https://m.facebook.com/profile.php?id=1374356512848719

No Serious Allowed
https://www.facebook.com/groups/456558614428724/

Noise for HD/JHD
https://www.facebook.com/groups/496927727039304/

Patton Family HD Support group
https://www.facebook.com/groups/142587229258963/

People with huntingtons disease
https://www.facebook.com/groups/152976171427526/

Potential Treatments and Cures for HD and JHD
https://www.facebook.com/groups/410217805688534/

Ruby’s Battle
https://www.facebook.com/groups/223298711169693/

STOPHD (Huntington’s Disease)
https://www.facebook.com/pages/STOPHD-Huntingtons-Disease/333622552542

Supports of Huntington’s Disease
https://www.facebook.com/pages/Supports-of-Huntingtons-Disease/698958866830990

Support jhdkids
https://www.facebook.com/pages/Support-jhdkids/323362071124982

Teach Police about HD
https://www.facebook.com/teachpoliceabouthd

The Grey Matter of HD – Intermediate Huntington’s Disease
https://www.facebook.com/thegreymatterofhd

The HD family Together in Prayer
https://www.facebook.com/groups/108353802540765/

The Huntington’s Disease QUEST for a Cure!!!
https://www.facebook.com/groups/247920126366/

Tina at warren woods health and rehabilitation center
https://www.facebook.com/TinaAtWarrenWoodsHealthAndRehabilitationCenter?__mref=message_bubble

True Grit Against Huntington’s Disease
https://www.facebook.com/pages/True-Grit-Against-Huntingtons-Disease/254668167542

Until there’s a cure: Huntington’s Disease Care
https://www.facebook.com/HuntingtonsDiseaseCare

Facebook support groups by location

HD Family Group Arizona :O}
https://www.facebook.com/groups/113531345399962/

HD Family Group Australia :O}
https://www.facebook.com/groups/153093724758162/

HD Family Group Delaware
https://www.facebook.com/groups/170500186341981/

HD Family Group Nevada :O}
https://www.facebook.com/groups/206047979435005/

HD Family Group Ohio :O}
https://www.facebook.com/groups/118649928216787/

HD Family Group Virginia :O}
https://www.facebook.com/groups/208403919191187/

Hdsa Baltimore
https://www.facebook.com/pages/Hdsa-Baltimore/108130325935051?ref=br_tf

HDSA Illinois Chapter
https://www.facebook.com/HDSAIllinoisChapter

Illinois Resources (contains some nation-wide info, too)
http://illinois.hdsa.org/userfiles/hd-il-resources-august-2014-111891429822349.pdf

HDSA Iowa
https://www.facebook.com/HDSAIowa?ref=br_tf

HDSA New Jersey Chapter
https://www.facebook.com/HDSANewJersey

HDSA RI
https://www.facebook.com/HDSARI

HDSA Utah Affiliate
https://www.facebook.com/pages/HDSA-Utah-Affiliate/112815388899748

HDSA Washington State Chapter
https://www.facebook.com/HDSANW?fref=ts

HDSA Wisconsin Chapter
https://www.facebook.com/HDSAWI

Huntington’s Disease Association Dorset Branch
https://www.facebook.com/HuntingtonsDiseaseAssociationDorsetBranch?ref=br_tf

Huntington’s Disease Association Liverpool
https://www.facebook.com/pages/Huntingtons-Disease-Association/180065095355823?fref=nf

Huntington’s Disease Association Northern Ireland
https://www.facebook.com/pages/Huntingtons-Disease-Association-Northern-Ireland/364489753708919

Huntington’s Disease Society of America, Central Ohio Chapter
https://www.facebook.com/pages/Huntingtons-Disease-Society-of-America-Central-Ohio-Chapter/114996051853580?ref=br_tf

Huntington’s Disease Society of America Duluth
https://www.facebook.com/pages/Huntingtons-Disease-Society-of-America-Duluth/353370991433657

Huntington’s Disease Society of America – North Florida Affiliate
https://www.facebook.com/HDSANorthFL?ref=br_tf

Huntington’s Disease Society of America – Louisiana Affiliate
https://www.facebook.com/HDSALouisiana?ref=br_tf

Huntington’s Disease Society of America Michigan Chapter
https://www.facebook.com/pages/Huntingtons-Disease-Society-of-America-Michigan-Chapter/161901767173275

Huntington’s Disease Society of America – Official Oklahoma Chapter
https://www.facebook.com/hdsa.official.okchaper

Huntington’s Disease Society of America – OHIO
https://www.facebook.com/pages/Huntingtons-Disease-Society-of-America-OHIO/199040860132425

Huntington’s Disease Society of America (HDSA) Pacific Southwest Region
https://www.facebook.com/pages/Huntingtons-Disease-Society-of-America-HDSA-Pacific-Southwest-Region/115252895152973

Huntington’s Disease Society of America, San Diego Chapter
https://www.facebook.com/HDSASanDiegoChapter

Huntington’s Disease Society of America (HDSA) Upper Midwest Region
https://www.facebook.com/hdsa.midwest

Huntington’s Disease Society of America – Washington Metro Chapter
https://www.facebook.com/pages/Huntingtons-Disease-Society-of-America-Washington-Metro-Chapter/113215083159

Philly Cure HD – serving South Eastern PA
https://www.facebook.com/PhillyCureHD

Huntington’s Disease associations alphabetical by country.

Serving many countries:

Huntington’s Disease Youth Organization
www.hdyo.org

The International Huntington’s Disease Association
http://www.huntington-assoc.com/International Huntington Association 

Argentina

APAEH (Argentina)
http://www.huntingtonargentina.com.ar/

Fundación HD Lorena Scarafiocca
(Argentinian Foundation promoting HD research)
http://www.fundacionhd.org.ar

Australia

Huntington’s Victoria (Australia)
http://www.huntingtonsvic.org.au/

Queensland Support Group

www.facebook.com/huntingtonsqld

Austria

Huntington’s Disease Association – Austria
www.huntington.at

Belgium

Huntington Liga – Belgien (frankophon)
www.huntington.be

Brazil

ASSOCIAÇÃO Brasil Huntington (Portuguese)
http://www.abh.org.br/

Canada

Huntington Society of Canada
www.hsc-ca.org

 Chile

Agrupación Chilena de Huntington (Spanish)
http://www.huntington.cl/

Colombia

Fundacion Huntington de Colombia (Spanish)
http://www.fuhcol.blogspot.com/

Huntington’s Disease Association of Catalunia
www.acmah.org/

Denmark

Danish Huntington Association
www.lhc.dk

Deutsche Huntington Hilfe e.V.German Huntington Help (incorporated society)
http://www.huntington-hilfe.de/

Finland

Family Federation Väestöliitto, Finland
www.vaestoliitto.fi/

GermaFamily Federation Väestöliitto, Finland
www.vaestoliitto.fi/ ny

Finnish Parkinson’s Disease Association, Huntington’s Disease Branch
www.parkinson.fi/huntington.html

France

Huntington-Inforum (French)
Informations sur la maladie de Huntington et forum de discussion
http://www.huntington-inforum.fr/index.php/forum-de-discussion

LA MALADIE DE HUNTINGTON : PRESENTATION ET SYMPTOMES (French)
http://www.huntington-inforum.fr/index.php/la-maladie-de-huntington/description-symptomes

French Huntington Disease Association
www.huntington.fr

Ireland

Huntington’s Disease Association of Ireland
www.huntingtons.ie

Neurological Alliance of Ireland
http://www.nai.ie/

Italy

AHIER – Associazione Italiana Huntington Emilia Romagna (Italian)
http://www.aiher.it/

Italian Huntington’s disease association – Milan
www.aichmilano.it

Italian Huntington’s Disease Association – Rome
www.aichroma.com

Italian Huntington’s Disease Association – Neuromed (Pozzilli)
strudel.di.unipi.it:8180/sitoweb/index.html

Fondazione La Lega Italiana Ricerca Huntington e malattie correlate onlus
http://www.lirh.it/

Mexico

Fundacion Huntington Mexico
http://fundacionhuntington.org/

“STOP Huntington: Decenio para la Enfermedad de Huntington”
http://stophuntington.org/

Netherlands

Dutch Huntington Association
www.huntington.nl

Northern Ireland

Huntington’s Disease Association –  Northern Ireland
northernirelandhd.tripod.com

Norway

Norwegian Huntington Association
www.huntington.no

Oman

Oman Huntington Disease Association – Muscat, Sultanat of Oman
http://hdom.org/

Poland

Polskie Stowarzyszenie Choroby Huntingtona
http://www.huntington.pl/

Portugal

Associacao Portuguesa de Doentes de Huntington (APDH)(Portuguese)
http://www.huntington-portugal.com/

Scotland

Scottish Huntington’s Association
www.hdscotland.org

South Africa

Huntingtons Association of South Africa
http://www.huntingtons.org.za/

Spain

Spanish Huntington Disease Association
www.informacion.e-huntington.org

Sweden

Huntington
Välkommen till min sida på Internet (Swedish)
http://www.huntington.nu/

Neurological Handicap Organisation in Sweden – Huntington’s Disease
www.nhr.se/

UK

Bristol Branch of the Huntington’s Disease Association
http://www.hdabristol.org.uk/

Huntington’s Disease Association – England and Wales
www.hda.org.uk

US
Huntington’s Disease Society of America
www.hdsa.org


Care continuum

Assistive technology/material resources

Affordability Shop http://www.help4hd-international.org/supportgroup.html

Assistance dogs
http://www.cci.org/site/c.cdKGIRNqEmG/b.8853259/k.AD08/Graduate_Stories.htm

BRODA chairs
http://www.brodaseating.com/

To get your ipad as a speak-computerhttp://www.hartvannederland.nl/top-nieuws/2015/autistische-tim-spreekt-dankzij-speciale-app/

Vita Huntington Chair – The chair for persons with Huntington’s disease
http://www.huntingtonstoel.nl/en

Quingo mobility scooter
http://www.ageuk.org.uk/products/mobility-and-independence-at-home/quingo-mobility-scooter/

Interacting with the rest of the world

HD Profile Card: A form that can be personalized with an individual’s photo and identifying information (site is down). http://www.hdsa.org/…/19564/HDS%20LET%20Profile%20Card.pdf

I have Huntington’s Disease
http://www.hdsa.org/images/content/1/9/19563/HDSA%20LET%20%27I%20Have%20HD%27%20ID%20Card.pdf

“I have Huntington’s Disease” info card.
http://www.hdac.org/features/idcard.html

My Crisis Template
<ahref=”http://www.hdsa.org/images/content/1/9/19565/HDSA%20LET%20%27My%20Crisis%20Template%27%20Pamphlet.pdf&#8221; target=”_blank”>http://www.hdsa.org/images/content/1/9/19565/HDSA%20LET%20%27My%20Crisis%20Template%27%20Pamphlet.pdf

NAPPI TRAINING
http://nappi-training.com/

Public Drunkenness by Kelly B.
http://www.hdac.org/features/article.php?p_articleNumber=201

Living at home

Age UK (can possibly assist with HD)
http://www.ageuk.org.uk/

HD Reach
Warning signs for Drivers
http://hdreach.org/for-families/driving/warning-drivers/

Lotsa Helping Hands
http://www.lotsahelpinghands.com/how-it-works/

Residential Care

Alphabetical by country

Australia

Arthur Preston Residential Services (Austrailia)
https://www.wesley.org.au/ourservices/disability/neurologicalsupportservices.html

A Place for People With Huntington?s Disease
http://www.caringfortheages.com/views/guest-editorials/single-article/a-place-for-people-with-huntingtons-disease/2486ea6066a2c6b20d99bd47fd1fefc0.html

New Zealand

Amaryllis House (NZ)
Address: 1-A Rodney Street, Waiwhetu, Lower Hutt 5010, New Zealand
Phone:+64 4-569 7290

Huntington’s Disease – The Rehab People (New Zealand)
www.rehabpeople.co.nz/huntingtons-disease.php

UK

Caring.com – senior care reviews and resources (UK)
https://www.caring.com/

Care Homes / Nursing Homes for Huntington’s Disease in the UK
http://www.carehome.co.uk/care_search_results.cfm/searchcountry/UK/searchchtype/huntingtons-disease

Stanley House Specialist Home Care  (UK)
http://stanleyhousecare.co.uk/
US

Home Care And Therapy Support For People With Huntington’s Disease (US)
http://www.interimhealthcare.com/Home-Care/Information/Huntington-s-Disease#.VPtisPnF-So

Huntington’s Disease, Rehabilitation and Integrated/Residential options (US)
http://www.lakeviewsystem.com/blog/2012/01/14/huntingtons-disease-rehabilitation-and-community-integratedresidential-options

Huntington’s Disease Residential Facilities (US)
https://www.brightwatergroup.com/ds/huntington-s-disease.html

Long Term Care – US Department of Health and Human Services
http://longtermcare.gov/

Resources for caregivers

“A Caregiver’s Guide to Huntington’s Disease” 2011
http://hdsa.org/wp-content/uploads/2015/03/A-Caregivers-Guide-to-HD.pdf

“Caregivers Guide to Communicating with Healthcare Providers”
HDSA, 2009. Designed to help HD families learn more about long-term care and to understand what may be involved in arranging this care for a loved one.
http://hdsa.org/wp-content/uploads/2015/04/Family-Guide-Series_Long-Term-Care.pdf

The Carers Association (Ireland)
http://carersireland.com/index.php

Caring for Rare Disease Caregivers
http://www.rarecaregivers.org/

Family Caregiver Alliance
National Center on Caregiving
https://caregiver.org/national-center-caregiving

Information for carers
http://www.ageuk.org.uk/home-and-care/advice-for-carers/are-you-a-carer/

Today’s Caregiver – for, about, and by caregivers
http://www.caregiver.com/

Teach Law Enforcement about HD from HDSA
http://www.hdsa.org/images/content/1/9/19562/HDSA%2

End of life . . .

“A Caregiver’s Handbook for Advanced-Stage Huntington’s Disease”
Jim Pollard, 2000.
http://hdsa.org/wp-content/uploads/2015/03/A-Caregivers-Guide-for-Advanced-Stage-HD.pdf

“A Caregiver’s Handbook for Advanced-Stage Huntington Disease”
Huntington Society of Canada
https://www.huntingtonswa.org.au/resources/Care-Giver-Handbook.pdf

Family Hospice & Palliative Care

“Advanced Directives for Huntington’s Disease” HDSA, 2013.
http://hdsa.org/wp-content/uploads/2015/03/HDSA_Family-Guide-Advance-Directives-for-HD.pdf

Five Wishes
http://www.agingwithdignity.org/five-wishes.php

Hospice, Palliative Care, and the Journey of Huntington’s Disease
http://www.hdsa.org/images/content/1/1/11441.pdf

Hospice
Contains links to the “Just talk about it” videos
http://www.familyhospicepa.org/patients-caregivers/hospice

Hospice Patients Alliance
http://www.hospicepatients.org/

Huntington’s Disease and Palliative Care
http://www.promotingexcellence.org/huntingtons/monograph/pe5670.html

National Hospice and Palliative Care Organization
http://www.nhpco.org/resources/choosing-hospice

Nursing Care In Late Stage Huntington Disease (author is at risk for HD) by Joanne Hunt, RN http://www.hdac.org/caregiving/pdf/NursingCareInLateStageHD.pdf

Palliative Care for Individuals in Late-Stage Huntington Disease
Huntington Society of Canada
http://www.huntingtonsociety.ca/wp-content/uploads/2013/10/Palliative_care_Health_Prof.pdf

The Irish Hospice Foundation
http://hospicefoundation.ie

The Irish hospice foundation
http://hospicefoundation.ie/healthcare-programmes/palliative-care/palliative-care-for-all/advancing-neurological-illness/

Tools for Advanced Planning
http://www.familyhospicepa.org/about-us/tools-for-advanced-planning
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19 Responses to HD info

  1. rivereditor says:

    Great resources.

    Like

    • Jean E. Miller says:

      Yes, this is a great resource – thank you for putting it together! At one time I had over 20 HD related websites with a ton of resources but they all disappeared one day when my web provider closed up shop one day without notice! I still have most of those files so I’ll try to contribute some here that you may not have – if I an figure out how to do that!

      Like

  2. Jim Bridges says:

    My compliments to you on an exceptional site. In some ways, it looks like you are attempting to do what Renette Davis had done in 1996 through 1998, until her husband came down with a fatal brain tumor. I’m enclosing, with her permission for you to use it, a link to her remaining website, which contains a number of poems, stories, and articles written by or about people with HD. Some are quite moving and hopefully will remain available for everyone.

    Like

    • noahezra says:

      Mr. Bridges. I’m so sorry Ms.Davis lost her husband when she did, the way that she did. Please thank her for permission to incorporate the information from her website into this one. During initial research for this project , I came upon several predecessors to this site which operated until, at some point, they abruptly ended. My assumption was that the people’s HD had progressed to the point that either they, or their caregivers, became unable to maintain these sites. Ms. Davis must be very strong to have been of such support to her husband and come out the other side of such an experience thinking about how to help others. I’m out of town now, but please let Ms. Davis know how much I appreciate the thoughtful contribution of her hard work to this museum. I’ll make sure that the things she collected and valued will be curated and preserved here. They are irreplacable expressions of the human condition of families faced with HD and will certainly provide comfort to and resonate with many people. I have thought a lot about the temperol nature of this site and am again reminded that I will only be a librarian for this body of information regarding HD for a little while. The time will inevitably come, probably before I expect or think it will, when it’s my time to pass the keys to this library to someone else. I’ll try to do as much as I can while I can with that moment in mind. I look forward to getting home tomorrow and discovering the treasures Ms. Davis has shared.

      Like

    • noahezra says:

      Check out the newest menu tab: The Renette Davis HD poetry anthology. Timeless. Expressive. Profound documentations of the HD experience. Thanks Mr. Bridges.

      Like

      • Jean E. Miller says:

        Thank you for adding these – many were written by my daughter, Kelly E. Miller when she was in her teens. Kelly died from complications of JHD in 1998.

        Like

      • noahezra says:

        Jean,
        Now I know who you are. You and your daughter’s words captivated me from the start. I wish I had known your daughter, and am happy that I now know you. As you can see, I am reading emails without regard to their chronological order. Not enough coffee. I would like to email you sometime if that is OK. Thanks for everything you have shared with this list. It will inform and inspire many people.

        Like

      • Jean E. Miller says:

        Hi Sarah – thank you for your nice reply! Yes, please feel free to email me personally any time, I’d love to hear from you! Jean

        Like

  3. For the section “Could my child have JHD?” Although it is likely that most at risk with JHD will go on to have an adult onset, we cannot ignore that a vast majority of persons at risk for HD are going untreated with early behavioral and cognitive signs. For those that have parents in the higher ranges of the HD allele >45 special care should be taken for the at risk children. Here is a great article to consider reading and share with your pediatricians if you suspect your children are showing ‘soft’ signs of JHD. It is so important to get help right away and educate our Dr.’s to keep a diagnosis of JHD withheld. http://www.ncbi.nlm.nih.gov/pubmed/17562929

    Like

  4. Please, we are an Argentinian Foundation that promotes research about HD:
    Fundación HD Lorena Scarafiocca
    web site: http://www.fundacionhd.org.ar
    Also we’v a radio programm
    email: fundacionhdlorena@gmail.com

    Like

  5. Kirsten says:

    Thank you for putting this together. I will use this as a much needed resource.

    Liked by 1 person

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