What a motivating day yesterday was!
In Palm Springs, California, it was opening day of the CHDI 10th Annual HD Therapeutics Conference.
Hundreds of researchers, clinicians and members from the HD community gathered to share, collaborate and work together to move closer to a treatment for Huntington disease (HD).
CHDI is a non-profit organization with a singular disease focus: HD.
The HD community is fortunate that CHDI has very generous philanthropic supporters who believe that they will change the history of Huntington disease.
The conference opened with CHDI’s major financial supporter sharing his story and his partner’s personal reasons for investing in this worthy cause.
We then heard from the keynote speaker, someone we all know well: Dr. Jeff Carroll. Jeff took us through his journey with Huntington disease: knowing his grandmother was sick but not sure why, his reckless youth, joining the army, meeting his wife, finding out that his mom was sick, learning about HD and his own gene status, the birth of his children who are HD-free due to in vitro fertilization and preimplantation genetic diagnosis (PGD), and his relentless dedication to ending this disease.
Jeff shared many photos of his life. One of the most memorable was taken when he was in the army. In the far background, behind a gathering of soldiers, stood a journalist with a camera. That journalist was Charles Sabine.
Several years later, Jeff and Charles would meet and become friends with a common cause: ending Huntington disease. What are the chances that he and Charles would meet and become friends? As Jeff states, “HD is not that rare.”
In his keynote address, Jeff expressed concern over having the numbers needed for later phase clinical trials and the need for subject-friendly practices to ease the burden of trial participation and increase numbers. He is motivated by many, including Nancy Wexler, Michael Hayden and so many other people who are working very hard to find a meaningful treatment for HD.
We should all be motivated.
Chief Executive Officer