I am incredibly honored and excited to serve as President of the San Diego Chapter of HDSA. San Diego is a dynamic and active community with a strong and supportive group of individuals who care about Huntington’s disease. And I feel lucky to count myself among this group.
When my Dad was diagnosed with Huntington’s disease, I had never heard of it. In the years that followed, my own journey resulted in seeking therapy, ultimately getting tested for the HD gene, finding that I was negative, and them making it a focus in my life to do something about this horrible disease. I have two gene positive brothers and two at risk nephews - and I love them very much. I am not a scientist, but I am tenacious and focused and committed. So, I will contribute to improving the lives of people with HD using the skills that I do have.
I cannot do it alone. I need the help of others. We are fortunate to have a board
that is just as committed as I am, who genuinely and truly care about this disease and making life better for people with HD. But it is a huge undertaking and we need help. If you have the bandwidth and desire to volunteer
, we need you!
In the years to come, we are working on creating and providing resources to our HD families in the form of a new social worker, a resource list that we are preparing and will share, with quarterly free education days
, and through our support groups
. Through the #LetsTalkAboutHD campaign, it is our hope that the stigma of HD, and the fear of talking about HD within HD families might be lifted. And most importantly, we want you to know that you are not alone.
While this disease can be isolating for many, the reality is that there are so many people like you, people from HD families who are struggling. We have unique challenges that can often be difficult for others to understand. But we as a community do understand each other. I encourage you to share your story. I encourage you to join our support groups. I encourage you to attend our education days. As the world starts to return to normal, I also encourage you, where appropriate, to particiapte in our events (both virtual and in-person), and to meet other HD families.
We make each other stronger when we work together. I look forward to helping this Chapter grow, and to helping HD families in San Diego and beyond!
President, HDSA San Diego Chpater