Resources
Huntington Disease Information
Huntington’s Disease Society of America (HDSA) This website provides information and links to all issues related to HD from understanding HD, living with HD, genetics, family care and research.
www.HDSA.org
HD Lighthouse Provides information about HD, treatment and care, diagnosis, research and HD community.
www.hdlf.org
Huntington Study Group provides information about research and HD basics.
www.huntington-study-group.org
Huntington’s Outreach Project for Education at Stanford (HOPES) this is a student-run project at Stanford University dedicated to making scientific information about HD more readily accessible to patients and the public.
www.web.stanford.edu/group/hopes
Help 4HD International is focused on helping HD families y bridging communications and partnering with institutions, industry and professionals. Their philosophy is always Family First. Nothing is more important than facilitating safe and healthy families and the way do that is through education, outreach and support.
www.help4hd.org
Genetics
HelpCureHD has a PGT-IVF grant program for families affected by Huntington’s Disease.
www.helpcurehd.org
National Human Genome Research Institute is focused on advances in genomics research.
www.genome.gov
Managing Behavior
Mental Health America is dedicated to promoting mental wellness through advocacy, education, research and services.
www.nmha.org
National Alliance on Mental Illness provides easy to understand information about mental illnesses, mental health care, diagnosis, treatment and recovery.
www.nami.org
National Suicide Prevention Lifeline provides information on getting help, suicide warning signs and resources. www.988lifeline.org
Youth
Huntington’s Disease Youth Organization (HDYO) gives support, provides education and offers motivation to get involved for children and young adults.
www.en.hdyo.org
HDSA National Youth Alliance (NYA) motivates youth to get involved with HDSA local chapters, affiliates and support groups in efforts through education, fundraising, advocacy and awareness for HD.
www.nya.hdsa.org
Caregiver
Caregivers Media Group provides information, support and guidance for family and professional caregivers.
www.caregiver.com
Family Caregiver Alliance provides information on various caregiver topics including grief and loss, taking care of yourself, community care options, long term care, advice care planning, caregiver tips, legal issues etc.
www.caregiver.org
Advance Care Planning
Aging with Dignity, has information regarding how to express, discuss and document your wishes as you age.
www.agingwithdignity.org
Caring Connections information about planning for the future, caring for someone, talking with loved ones and grieving a loss.
www.caringinfo.org
Harvard Brain Tissue Resource Center information about how to be a brain donor and how the brain tissue is used and distributed.
www.mcleanhospital.org/brain-bank
Financial
Social Security Administration provides information and application forms for Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI) and Medicare.
www.ssa.gov
U.S. Department of Labor, Employee Benefits Security Administration has information regarding Consolidated Omnibus Budget Reconciliation Act (COBRA).
www.dol.gov/ebsa
For other resources that we haven’t posted, including questions you might not even know to ask, we encourage you to contact Philly Cure HD’s Sherri McElfatrick at 215-219-352.
Research
On HD Buzz you can sign up to follow the latest HD research and you can sign up for their latest news through Twitter, Facebook, Email or RSS Subscription.
www.en.hdbuzz.net
This Week In Huntington’s Disease Research keeps you up-to-date on HDSA research activities, recently published work about Huntington’s disease, historical moments in HD research and more.
www.hdsa.org/blog
On HD Trial Finder you can identify all clinical trials that match your profile and the closest trial sites. They can also update you when new studies open that match your profile.
www.hdtrialfinder.org
Enroll HD is a collaboration between Huntington’s disease families, clinicians, and researchers to accelerate progress toward effective treatments.
www.enroll-hd.org
HDSA Research Webinars invites clinicians and scientists to present directly to families about their recent work, online and at our National Convention.
www.hdsa.org/hd-research/hdsa-research-webinars
Videos
SHANA
Predictive testing for Huntington’s disease occupies an unusual place in genetic medicine. A gene expansion above a certain threshold means the disease will eventually arrive. And yet age of onset and symptoms can vary widely from one person to the next, even within the same family.
Most people don’t have to face this kind of decision. Some, one day, will.
In our new HD Awareness Month episode, I sat down with Shana Ward, a research coordinator at CHOP who is entering the Master of Science in Genetic Counseling program at the University of Pennsylvania this fall. She helps us understand what genetic counseling actually does, and why the choice to test is so individual.
Two moments from our conversation that have stayed with me:
“It’s a decision that you can’t take back. Is knowing going to be helpful or not? But then once I do know, I can’t un-know it.”
“We always say that knowledge is power, and for some people it is. But for others, that knowledge might be something irreversible that they can’t take back, and that just kind of causes a lot more anxiety.”
The conversation is sobering and hopeful in roughly equal measure. No family should face this uncertainty alone, and access to thoughtful care and active research is itself a form of hope.
Produced for HD Awareness Month by PhillyCureHD
SHERRI
Host Nancy J Hess talks with Care Consultant Sherri McElfatrick from PhillyCureHD about the mission and outreach of the organization.
I’m so glad to have you here today, and there’s, there’s so many questions I have. You play such an integral role in Philly Cure HD. I think it would be helpful to start off with a little bit about your background, and then we’ll get into- We’ll get into all the ways that you work with Center of Excellence, as well as the local Philly Cure HD group. Tell us a little bit about how you came here to this position that you, of your, that you have now.
Thanks for having me, Nancy. So I have been a licensed social worker for well over 20 years. In the last few years, I’ve also become a licensed clinical social worker. My previous experience before Philly Cure HD had been primarily in hospice palliative care and medical case management. And there was an opportunity for me to be home with my children.
However, I really love working and working with people, and I found Philly Cure HD. It was the perfect place for me to land, and I’ve- Mm-hmm come to love this population. I had never worked with the HD community prior, which was so surprising given I worked in hospice and palliative care for 11 years and had never run across an HD patient. So this was really a learning and growing experience for me, but it’s been so very rewarding.
LAUREN
For the final week of HD Awareness Month, PhillyCureHD shares a special two-segment episode with Lauren Holder, a fierce advocate for the HD Community.
In segment one, Lauren shares her personal story of learning at age fifteen that Huntington’s ran in her family, testing gene-positive at twenty, caregiving for her father through his final years, and making decisions about having a family of her own. She speaks frankly about being discouraged to go through with genetic testing and challenges the narrative of HD as a death sentence.
In segment two, Lauren turns our attention to the role of advocacy and what is happening right now with current treatments and delays by the FDA to advance them. She walks us through the September 2025 announcement that uniQure’s gene therapy AMT-130 slowed Huntington’s progression by seventy-five percent, the November 2025 reversal at the FDA that put approval out of reach, the recent resignations at the top of FDA leadership, and the joint letter just sent to the President, Senate leaders, and Congress from five HD organizations and nearly fifty thousand petition signers. She explains why this fight matters not only for HD but for every rare disease community watching.
Lauren is the host of the Help for HD Live podcast and a co-founder of HD PACE (Patients Accelerating Clinical Endeavors), which is also building a survey-based rating system for HD clinics.
“For our community, the clock is not metaphorical. It is real and it does not stop.” – Lauren
I hope you’ll listen, share, and support the work being done during HD Awareness Month.
#HuntingtonsDisease #HDAwarenessMonth #RareDisease #PatientAdvocacy #Caregiving #GeneticTesting #HDCommunity