r/Huntingtons

I was recently looking to make a donation to an HD organization and many recommended HDSA. Before I make donations, I like to look through non-profit's public 990 tax documents and was amazed at huge financial commitments that wasted millions of dollars in donations.

Did you know that HDSA spent 1.8 MILLION dollars in 2023 and 2024 to create an online patient data collection platform that was deemed a complete failure. The platform was through a company called RARE-X, and it wasn't even mentioned in their 2024 year in review. How do you invest so much money in something and not mention it?

To put this in context, during the same two years (23’-24’), HDSA only spent $240,000 on lobbying efforts. Given the lack of major policy progress for HD families over the past years, it raises real questions about organizational priorities and where donor dollars are having the greatest impact.

Here are some other interesting stats that I found:
-In 2023, the HDSA CEO was paid a bonus of $49,000 on top of her $320,000 salary, despite the organization reportedly operating at a loss of around $1.3 million that year.

-In 2024, HDSA signed a 10-year lease on their NYC office making them liable for $3 million dollars over that time. Based on their website, it looks like only a few staff live near NYC.

-The HDSA National Convention this year is at a JW Marriott Resort in Phoenix where rooms rates are $300/night. Plus, registration fee $250/person. I know there are scholarships offered but that only accounts for a small number of attendees.This is unaffordable for people who need to fly in. The HD community doesn't need FANCY; they need their HD FAMILY!

Is anyone on the board of directors paying attention to this financial mismanagement? Who is accountable for this mistake?  It pains me to think how many volunteer hours went into raising $1.8 million dollars that got this community nowhere.

I also found that HDSA has a lot of impactful programs and many employees who really care, but the community should always be making sure that donations are properly managed, and people are held accountable for poor decisions (past, present and future).

Well, I'm absolutely devastated that my mother (63) has been diagnosed with HD. The only thing is that while we are at a point right now where we are scared and sad, she seems to be asymptomatic. She got tested because her brothers and father got it in their 40s and have long since passed and she decided to do it.

Do people remain asymptomatic? I imagine it won't be forever: what are other people's experiences?

Hello,

I (35Y/O) am HD positive, with a CAG count of 43. My husband and I are considering on going through IVF and PGT testing to get pregnant. We have talked about all the risks, fears, concerns, hopes, etc..... and decided that we want to do it. I feel partially irresponsible for bringing a baby into this world knowing that I won't be able to be there for the baby in the future, and that I will change at some point. So I would like to hear from anyone who has gone through the IVF experience being HD positive. When did you know you wanted to do it? What has helped with dealing with the fear, and raising the child at the same time? Did you feel a bit guilty/irresponsible? if so, what has helped with those feelings? ETC...
We would love to hear all of the experiences