There are many ways Huntington’s disease (HD) families/patients can contribute in moving forward in the understanding of HD that could find a cure or new therapies for the cruelest disease on the planet.
There many ways to get involved:
HD Trial Finder: Hope for tomorrow begins with your involvement today! HD Trialfinder is a clinical trials matching service: a way for individuals with Huntington’s disease, caregivers, healthy volunteers, and physicians to connect with current research studies.
Brain Donation for HD Research: To foster cutting-edge Huntington’s disease drug discovery research, there is great need for Brain donations from HD families. A brain donation is a gift of knowledge that is essential to enhance the understanding of HD.
Lora, Cindy and Marcia Marin
My two sister-in-law, Marcia and Cindy, donated brain tissue for research. Although deciding to become a prospective brain donor can be difficult, signing up is a simple process.
At this time, the HDSA San Francisco Bay Area Chapter is recruiting for many different volunteer positions. They are: Fundraisingcommittee for the two Team Hope Walks, Day of eventcommittee, Board member, HD FamilyEducation Day committee and Blogger/writer. Please visit VolunteerMatch.org to read each position.
This month, HDSA San Francisco Bay Area Chapter begins its 5th year of operation. It has been a long and exciting journey. This is how it all began.
In 2019, seven Huntington’s Disease advocates, and myself, sent a Letter of Intent to Huntington’s Disease Society of America (HDSA) requesting to form the HDSA San Francisco Bay Area Affiliate. In October 2019, we were awarded that status and held our first Affiliate meeting on January 20, 2022 at UCSF Medical Center with an attendance of 22 local folks.
From 2020 through 2022 we were a “Chapter in Training” being mentored by HDSA. In December 2022, we reported the Affiliates’ achievements and progress to HDSA made during the three (3) year period.
In February 2023, the SF Bay Area Chapter board members met with HDSA leadership and later that month was awarded the new status of HDSA San Francisco Bay Area Chapter.
There are many people to thank for the success of the Chapter and some of them are: Jay Denhart-Lillard, Uma Thontakudi, Steve McConoughey and the advisors from the HDSA Centers of Excellence at Stanford and University of California, San Francisco.
Satve can answer questions about Huntington’s disease, local resources like a support group, refer to HDSA Center of Excellence at Stanford Medicine or UCSF Medical Center, testing, family planning and much more.
