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HD Awareness, Resources


May is Huntington’s Disease Awareness Month

Dawn Green and I are President’s of a Huntington’s Disease Society of America (HDSA) Chapter; Dawn leads the HDSA Northern California Chapter and I organize the HDSA San Francisco Bay Area Chapter.  HDSA is a nonprofit and 90% volunteer based.  There are 53 Chapters and Affiliates across the U.S. and all are managed by volunteers.

Huntington’s disease (HD) is a rare, fatal, brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers, simultaneously.  There is NO CURE.

Because HD is very rare, HDSA’s business model focuses on its Mission Statement:  HDSA is dedicated to improving the lives of everyone affected by Huntington’s disease and their families.  HDSA fulfill’s their mission by providing programs and services to HD families across our nation so they may have the highest quality to their lives on their long HD journey. 

HDSA’s Vision Statement:  A World Free of Huntington’s Disease HDSA also conducts research in the search for a cure or

During this important month for Huntington’s disease, please go to to learn about the disease and consider making a donation to help in the fight against this horrific disease.

List of resources:

Online Support Groups: HDSA.ORG/OSG

PatientsLikeMe: HDSA.ORG/PLM



HDSA’s National Youth Alliance: HDSA.ORG/NYA

Youth Mentorship Program: HDSA.ORG/YMP

Disability Resources: HDSA.ORG/DISABILITY

Locate Resources in Your Area: HDSA.ORG/LOCATERESOURCES

We Can Never Lose HOPE…

Center of Excellence, Resources

Huntington’s Disease Society of America Centers of Excellence

Louise Vetter, CEO and President of the nonprofit, Huntington’s Disease Society of America (HDSA), has made increasing  the number of HDSA Centers of Excellence, in the U.S., as one of her priorities in her 10- year leadership at HDSA.  Louise said, “We are deeply committed to helping families affected by HD access experienced care.”     

In 2020, HDSA Centers of Excellence (COE) program expanded to 50 Centers from 47 in 2019, and from just 20 in 2015. The HDSA Centers of Excellence are multi-disciplinary care teams with expertise in Huntington’s disease that share an exemplary commitment to providing comprehensive care.

Currently, there are now 54 COE’s and California was a blessed to have seven (7) COE’s at Stanford University, University of California, San Francisco, University of California, Davis, University of California, Irvine, University of California, Los Angeles, and University of California, San Diego.  HDSA Center of Excellence Partners:  Kaiser Permanente Northern California.

Find an HDSA Center of Excellence In Your Area

When Huntington’s disease families connect to a Center of Excellence, they will find support and invaluable resources to help their family as they struggle with the many challenges of HD.

We Can Never Lose HOPE…….

Author Therese Crutcher-Marin, HD Advocate

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Online Silent Auction Supports Community & Social Support for Huntington’s Disease Families

Author Therese Crutcher-Marin, HD Advocate

The HDSA San Francisco Bay Area Affiliate is hosting an Online Silent Auction to help fund resources available to individuals or a family when they learn that their mother, father, grandmother, etc. has or had Huntington’s disease (HD), like my family did.  It’s life changing. 

The good news is that the nonprofit, Huntington’s Disease Society of America (HDSA) has grown over the years and offers many resources to HD families.  Unfortunately, at this time, there is no cure or therapy for the rare, fatal, genetic brain disorder yet, but the resources available can greatly improve the quality of life to a person struggling with the disease.

To view all HDSA online resources, visit  HDSA Community & Social Support website.


We Can Never Lose HOPE…








Virtual Resources for Huntington’s Disease Families

As we shelter in place to fight the Coronavirus, I’m sharing the online tools and virtual resources the Huntington’s Disease Society of America (HDSA) has available on their website.  The resources are free to everyone.  See for additional information.

If you’re unable to view the video, go to:

Disability Chat with Allison Bartlett and How to Sign Up to Chat:

Online Support Group Schedule & How to Sign Up for a Session: 

Telehealth and How to Make an Appointment with a therapist Licensed in your State

We Can Never Lose HOPE………..



Huntington’s Disease Resources

To sign up for the HDSA ONLINE support group, go to this website:


The HDSA UC San Francisco Center of Excellence (Huntington’s Disease Clinic) website:

HDSA Stanford Center of Excellence  (Huntington’s Disease Clinic) website:

UC Davis HD Clinic website:

Kaiser HD/Genetic Movement Disorders, Sacramento:


Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network

Melissa’s Facebook page and HD Support & Care Network website: 



We Can Never Lose HOPE………….

100% of the profit from Watching Their Dance is being donated to Huntington’s Disease Society of America (HDSA).  Therese has  donated $15,000.00 to HDSA which was the profit from book/ebook sales since it was published.