[thehuntingtonspost.org]

Yes it appears to be accurate. Marsha explained it in a different post. From what I understand, if you donate to HDSA and mark your donation for RESEARCH only, they must apply the money to research. I wish I could remember, I even think it might have been my post, but then my mind is having senior moments more and more frequently. LOL

Take care,

Carla

Marsha-

I donate a considerable amount to HDSA through payroll deduction at my workplace and just signed another pledge for 2013 today.
I put the code for HDSA in but there appears to be no place to differenciate where the money goes to in this organization.

Do you know if a person can write to the organization and state where they want their monies to go? Also, then I wonder do they
truly put it toward research if that is my request?

They have a very high administrative rate compared to many other agencies. It is a little over 28%.

OR, I could possibly contact a Center of Excellence for HD and put my money to work there if that would be better usage.

What are your ideas?

thank you

Sharon

Wow, I had no idea that the money raised and/or donated wasn't going to research and finding a cure!! I have been involved with the IL chapter of HDSA since my mom was diagnosed 20 years ago!!! What the heck happened??

This is really, really sad!!!

Here's what I wrote when this topic came up before:
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The previous board got in the habit of being overly optimistic about projected revenues. Over a multi-year period they committed too much money in research grants and then when ending the year at a deficit, assumed that it was just a question of timing, ie that revenues would be coming in just after the end of the fiscal year and all would be settled. I have been a treasurer for a couple of nonprofits and that often happens but then you have to watch carefully the next month or so to make sure that that is correct and the anticipated money does in fact come in. Well it didn't and they didn't take note and they got further and further behind in meeting their commitments, not just to research but to the COEs. We've been in a recession plus you can't always count on people to meet pledges. The current board did take note and stopped making new commitments until the old ones were paid off. It's unfortunate but it had to be done to restore financial stability to HDSA and also because not to do so would jeopardize researchers and COEs. Large institutions like universities and hospitals can cover expenses when payments are late because of their cashflow but not indefinitely.

So money that got raised did go to COEs and did go to research but it wasn't for new programming but rather for old obligations. Nobody is happy about this and I think HDSA should have been more upfront about what happened but it wasn't a secret and the reason people are talking about it is because the information is available in reports and was openly discussed in interviews.
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I need to add that if you raised money for research, it went to research, but if it was for old obligations that's how it gets classified in accounting reports so it looks like HDSA is not making any contribution to research.

Aproximately $100 million dollars is being spent on HD research every year. It comes from government grants, CHDI, other foundations, pharmaceutical companies with promising drugs in the pipeline, and individual contributions to research. programs. Personally I think HDSA did the right thing to get caught up with its obligations. All of the Coalition for the Cure researchers have been able to continue their work with funding from other sources. I know because I report on their work. What that means is that if HDSA just hands over the level of research funding it takes in, it's going to be a drop in the bucket UNLESS it's used strategically. I think HDSA has done that well in the past, funding some speculative things that have paid off. And when research funding is resumed, I think it needs to be used strategically.

There are certainly issues that can be raised with HDSA. Steve and I don't hesitate to raise them either. But I really think this one - holding off on new research grants while the old ones got paid off - is making a mountain out of a molehill.

The current board has also been doing strategic planning and part of that has been to listen to what YOU have been saying and trying to address problems. For years we complained that Social Security Disability guidelines do not reflect real HD symptoms. The criteria were either 1) drop in IQ to below normal levels (when IQ is actually preserved for a long time in the disease) or 2) disabling chorea. Well HDSA has done a lot of work to get those guidelines changes and eliminate the waiting period. We complained that doctors were out of date with their knowledge about HD, even many neurologists and HDSA now offers Continuing Education courses for doctors and doctors are taking them! We complained that there was no one in the national office to call in a crisis for information and hook-up to local resources. HDSA hired someone to do that. We told them that too many of our loved ones with HD were being stopped by police officers who thought they were intoxicated. HDSA is producing a training program for police officers. So I think that this board is making a real effort to respond to the problems of real families.

I remember the days when family sites like this one, Jerry's original Lighthouse, Renette's site, Jean Miller's site were the only reliable places to go to get HD information because HDSA had no interest in the internet. I remember when an earlier board thought that raising money for a cure was the only thing HDSA should really be doing (you know, cure it and all the needs would go away, never mind about the people bleeding in the trenches right now). I remember when grass roots activists - Jean Miller, the Hodgsons, and Pat Pillis had to convince HDSA to start the National Youth Alliance. Things are better than they were when my late mother in law was diagnosed, in terms of symptomatic treatment, awareness, and with our national organization.

Marsha, thank you for the detailed information. I definitely have a much better & clearer understanding of what happened than I did just from reading the posted article. I'm on a npo board & I appreciate the HDSA board being responsible stewards. I also greatly appreciate all of the other efforts & progress made in education, advocacy and family support. I'm so glad that all of the areas including research are receiving appropriate attention & funding. Utilizing multiple diverse funding sources for research, etc is a wise & necessary strategy that also builds partnerships, coalitions, and expands opportunities. Again, I sincerely thank you for taking the time to clearly & concisely shed light on the overall situation.

Thank you Marsha.

Paula

Marsha-
I appreciate you clarifying the situation with HDSA. Thank you very much.
Sharon

I was told just recently that by the end of this year, those old research obligations will be paid off. Additionally, HDSA is helping to fund the stem call research. So, I think things are becoming more balanced, the budget, the research and the services.

Carla