Last Updated 6.1.23

HD Genetics Resource Guide

Regardless of your results, HD Genetics is here to help you at any point during your HD journey. The resources below are hopefully valuable to you &/or your family. If you have any questions about the information provided in this guide, or if you are looking for additional info, we are here to help!

Wes Solem, Director of Genetics

Certified Genetic Counselor

Wes@HDgenetics.com

Text / call:  704-343-8743

BJ Viau (View) , Founder of HD Genetics and HD family member

BJ@HDgenetics.com / 952-270-5428 

Twitter: BJsViau

BJ’s HD Column: www.huntingtonsdiseasenews.com/negative-to-positives-b-j-viau/ 

Stay up to date with HD Genetics through their social media:

Genetic Information:

HD Resources

This list is a compilation of resources and education for your awareness. None of the information listed below is intended as a recommendation or an endorsement; all are options for you to consider as an individual and to choose what may be best for you. If you’d like more information regarding any of the resources below, please reach out to the HD Genetics team. We can either provide you that information directly or connect you to the right person who can.

Counseling / Therapy

HDSA + AmWell Telehealth Counseling • hdsa.org

• The service offers 8 free counseling sessions for individuals & families affected by HD and no insurance is required. This service connects individuals with social workers & psychologists that are educated about Huntington’s disease by the Huntington’s Disease Society of America (HDSA). The service is open for anyone affected by HD – if you are at-risk, have or have not had genetic testing, are or are not showing symptoms, and/or if you are a caretaker or loved one of someone who is affected by HD or at-risk of HD — this service is free for you.

National Huntington’s Disease Patient Advocacy Organizations 

(in alphabetical order) 

Help 4 HD • help4hd.org

• Mission is to educate the world about Huntington’s disease and Juvenile Huntington’s disease. The aim is to serve the HD community and provide information, education, and resources.
• Host regional in-person (& virtual) family conferences (called HIPE) throughout the year. The 2023 Family Conferences will be held August 13 in Detroit, MI and annual conference October 13-14 in San Diego, CA.
  • HD Genetics will be at both events.
• Host Help 4 HD LIVE, a weekly podcast covering a wide variety of topics for HD families.
• Host Help 4 HD TV, a weekly YouTube show covering a wide variety of topics for HD families.
• Have financial relief programs for HD families who are in desperate need including a program / partnership with HD Genetics to offset cost of genetic testing.
• Operationally run by professionals who are also HD family members.

Help Cure HD – helpcurehd.org

• Created to help those suffering from HD and to aid in the journey to find a cure. 
• HelpCureHD was inspired by Lee Smith, mother to Joe Smith, professional pitcher for Major League Baseball teams, who was diagnosed with Huntington’s disease in 2012. 
• Provides financial grants for PGD-IVF, a reproductive option to prevent HD risk in offspring.
• HelpCureHD has specific financial grant cycles; the current cycle just closed on March 1, 2023. A Fall grant cycle will be open later this year.
• HepCureHD’s Annual Gala fundraiser and education day is taking place September 7th in Houston, TX.
  • The HD Genetics team is planning to attend.

HDSA • hdsa.org • Huntington’s Disease Society of America

• HDSA is dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. In the battle against Huntington’s disease no one fights alone.
• National network of chapters, affiliates, support groups, volunteers and centers of excellence. Find resources here.
• HDSA Centers of Excellence are designated places with high standards of care and treatment for people impacted by HD. Currently, there are 55 centers across the country who each have a team of healthcare professionals who are leaders in HD care.
• Provides virtual support groups.
• Provides free telehealth counseling services for HD families via Amwell.
  • Over the course of a year, you (or any member of your family) may schedule up to 8 visits with an HD-knowledgeable licensed social worker or psychologist through this free program provided by HDSA.
• Supports the HD Trialfinder (www.HDtrialfinder.com) which helps individuals learn about and get connected to HD clinical and observational trials.
• HDSA’s National Convention is taking place June 1-3 in New Orleans. A gathering of almost 1,000 individuals from across the HD community.
  • HD Genetics team will be attending & exhibiting!
• The National Youth Alliance (NYA) program supports young people from HD families who are under age of 29 through support, education and empowerment. The NYA also hosts a full-day track for young people on the Thursday of national convention weekend. The NYA also hosts regional retreats throughout the year in various locations.
  • Denver Sept 29 – Oct 1
  • California TBD Nov 10 – 12
• Publishes a weekly blog to provide updates on research.
• Provides information concerning the Social Security disability process, health insurance, and legal resources by connecting you with Allison Bartlett, a disability attorney who specializes in guiding people with rare, chronic conditions, like Huntington’s disease. Allison is HDSA’s Manager of Disability Program.

HDYO • hdyo.org • Huntington’s Disease Youth Organization

• An international non-profit supporting, educating, and empowering young people up to 35 years, impacted by HD.
• Lots of educational content about HD written for young people by young people (e.g., genetics, basics about HD, having children, taking care of a parent, etc.).
• Lots of educational content for parents on how to talk to their children about HD.
• Ambassador program is an opportunity to get engaged with other young adults from around the world to advocate, educate and connect others. 
• First ever in-person young adult congress took place in Glasgow, Scotland in March 2023.
• Active Facebook group to connect & support young people under the age of 35.

HD Reach • hdreach.org

• HD Reach works to improve the care and quality of life of those affected by Huntington’s disease. 
• Founded as a nonprofit in 2009.
• Provides connections to medical providers, referrals to local services, care management, family support, education, and anonymous genetic testing.
• HD Reach & HD Genetics partnered to create a monthly virtual meetup for anything related to genetic testing. Join our teams the 1st Wednesday of each month at 4pm EST via doxy.me/hdgenetics 

Social Media Groups & Threads

There are a lot of social media groups or online threads where others impacted by HD come to support each other and share information. With anything on the internet, please make wise decisions in what you share, but also with which information you choose to accept as true and false. To confirm anything you learn on the internet, please feel free to reach out to the HD Genetics team. 

Facebook Group: Huntington’s Disease Genetic Testing (this group was created by HD Genetics as a place for people to specifically talk about genetic testing)

Facebook Group: HDSA Arkansas Affiliate

Facebook Group: Huntington’s Disease Youth Organization Hangout

Facebook Group: Huntington’s Disease Support Group

Facebook Group: Huntington’s Disease Youth Organization Parent Support Space

Facebook Group: Caregiver Support Group

Facebook Group: Huntington’s Disease Carers Support Group

Reddit Channel: Huntington’s Disease

Huntington’s Organizations Working on Clinical Trials and Treatments

HSG • huntingtonstudygroup.org • Huntington Study Group

• A boutique Clinical Research Organization (CRO) that conducts clinical trials and provides programs that impact research and care.
• A network of clinical trial sites around the world that typically run Huntington’s clinical trials. A list of their trial sites and locations can be found here: https://huntingtonstudygroup.org/hsg-credentialed-sites/ 
• HSG’s Annual Conference is in Chandler, AZ on Nov 2-4, 2023.

HD Buzz • hdbuzz.net

• HD research news written in plain language. 
• Content is written by scientists for the global HD community.
• One of the best places online to stay up-to-date on high level details of clinical trials happening in HD.

CHDI Foundation • chdifoundation.org

• Privately-funded, not-for-profit biomedical research organization devoted to a single disease – Huntington’s disease. 
• Mission is to develop drugs that will slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible.
• CHDI supports all the other organizations listed in the resources guide. They do not provide any direct resources for HD patients and families.

HDF • hdfoundation.org • Hereditary Disease Foundation

• Focuses on curing Huntington’s disease and its devastating consequences to individuals and families with the disease.
• Provides Postdoctoral Fellowships and Grants to researchers to advance the discovery and development of treatments for Huntington’s disease and other brain disorders.

Upcoming In-Person and Virtual Events

HDSA National Family Convention

• June 1-3, 2023 in New Orleans, LA
• Largest yearly gathering of HD families and professionals aiming to provide help for today and hope for tomorrow.
• The HD Genetics team will be attending.

Help4HD’s HIPE Day – Detroit MI

• August 13th
• The HD Genetics team will be attending.

Help4HD’s HIPE Day  – San Diego

• October 13-14
• The HD Genetics team will be attending

HSG’s Annual Annual Meeting – Chandler, AZ

• Nov 2-4
• The HD Genetics team will be attending  
• Details found here: https://huntingtonstudygroup.org/about/our-annual-meeting/ 

There are many other local events and fundraisers constantly happening across the country. Please reach out if we can help you locate anything specifically in your area.

Huntington’s Disease Clinical & Observational Trials

Staying up to date on all of the clinical trials is difficult as the landscape is ever-changing. If you are interested in learning more about clinical or observational trials, please contact the HD Genetics team and we can provide some education about studies and connection to trials sites that can help you learn if you might qualify for an enrolling study. 

To find the latest details about any clinical or observational trial, you can visit www.ClinicalTrials.gov and type in “Huntington’s Disease” in the search bar. 

HDSA also supports the HD Trialfinder (www.HDtrialfinder.com) which helps individuals learn about and get connected to HD-specific clinical and observational trials.

Pharmaceutical and Biotech companies with current clinical trials for Huntington’s disease (in alphabetical order):

• Annexon
• AskBio
• Genentech/Roche
• Neurocrine
• Prilenia
• PTC Therapeutics
• SAGE
• uniQure
• VICO Therapeutics
• Wave 

Observational Trials: 

These studies don’t test potential treatments. Instead, researchers observe participants on their current treatment plan and track health outcomes.

Enroll-HD – www.enroll-hd.org  

• Enroll-HD is the world’s largest observational study for Huntington’s disease families—currently more than 20,000 people are taking part in Europe, North America, Australasia, and Latin America. 
• Monitor how the disease happens in people and how it changes over time in very fine detail with the same tests and assessments around the world
• Researchers can use the huge data and biosample collection to learn more and come up with new ways to effectively treat HD.
• Anyone can participate from an HD family regardless of their genetic status. 
• Study visits are typically once a year and last about a ½ day not including travel to study site.
• To find a ENROLL-HD study site near you, visit this link.

Prevent-HD – www.neurology.wisc.edu/prevent-hd

• A research study to help develop and refine the tools that can be used in clinical trials to measure the effectiveness of treatment before the disease impacts daily life. Prevent-HD wants to build a case for testing these treatments much earlier in people at risk for HD. 
• Starting treatment sooner may help delay the start of symptoms or slow down the progression of the disease. Some scientists think that treatments may be more likely to work when the brain is still healthy, rather than later in the disease when many brain cells are gone.
• Only one location currently accepting participants: Madison, WI
• Must have genetic testing to participate. To see if you qualify, reach out to hdresearch@neurology.wisc.edu or call 608-890-4040, or ask HD Genetics for an introduction.

You can also find a list of other non-clinical studies listed on HDSA’s website found here. Many of these are online surveys that graduate students are conducting to help us learn more about HD.