I recently saw a post on Facebook that claims the HDSA only spends 7% of the donations and monies raised to fund research aiming to cure HD. Does anyone know if this is true? And if not funding research, what do they do with the money?

Carla

Charity Navigator has some stats:

[www.charitynavigator.org]

I tried answering one of the people who had those questions on Facebook and he has called me a liar, blocked me, deleted my posts, and told me never to contact him again.

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.

Thanks Eric and Marsha,

So if I want my donations to go to fund research for a cure, how do I find direct recipients of that money? Because, I have mistakenly believed that the donations to HDSA funded research to cure HD. If that is not the case, I would like some direction on how to identify where research is being done and make donations there.

Thanks and have a happy 4th of July everyone!

Carla

Carla you can put on the memo portion of your check RESEARCH ONLY, by law a Not for profit has to earmark that money for research only. No money will go to your local chapter.

OR you can send your money to HSG, the huntington's study group or HDF, the heredity disease foundation instead also. HDF is the reason the HD gene was found and was originally part of HDSA until they decided to spilt. HDF wanted to focuse more on research and scientist. HDSA wanted to focus on family support.

"HDSA wanted to focus on family support" ....... and how's THAT working for us all?

Oh Pat are you trying to get me in trouble? Don't get me started on all that.

I just re-read Mapping Fate. It has a good history on the beginings of HDSA and that was the one of the main reasons for the split. Guthrie wanted to focus on rallying and support families. The Wexler's, the dad at that point believed to strongly in the science. The other problem was Guthry did not fairly distribute money.

Pat, as far as I can tell it's not working too well for us! LOL
Maria, thanks for the suggestions.

I feel that there are many areas where families need real and tangible support, NH identification and selection assistance, financial assistance for pre-symptomatic testing of our young people at risk if they would like to know before starting a family, durable medical equipment assistance, grants for emergency needs...I could go on but I will spare us all!

Take care,

Carla

Carla, AMEN! Maria I would never try to get anyone in trouble.. just my opinions here, that's all.

My sister Joan Morgan Gordon was with Dr. Andre Barbeau, the doctor who the Wexlers asked to go to venez and , Marjorie Gurthrie, and Ralph Walker to set up the International Comiittee to combat HD. Wexler did not write the first book on HD, Dr. Andre BArbeau did. I just found a copy on line, but first read it at my sissters house. Dr. Barbeau was our neuro at hotel dieu. He did our genmetic counselling. andd was my sister Joan's neuro giving her HD probable which was confirmed by brain autopsy when she died in 1979.

[www.huntington-assoc.com]



Edited 1 time(s). Last edit at 07/09/2012 03:15AM by dustyblues.

Yes Dusty Dr. Barbeau was mentioned a lot in the book. He deserves a lot of credit.

I am glad to hear that. I used to drop in on him as long as his door was open. He collected alpha ribbons which is the brains lowest function but awake not asleep. When i told my neuro at Mac he said he did it to get paid. Barbeau was sure that the HD brain was different even before the caudate shrank. many years later another reseacher was looking the same waves from a HD view. Barbeaus records disappeared because I did Cohort in that hospital and ask them to get my younger records, they could not find them which I thought was terible because I'm the same patient and I'm not dead so there is no reason to close the file. Barbeau also had you write and do spiraling circles which i did lousy even in my youth.

He always was hoping for a test and a cure. He loved babies too, and each new one we showed them. I think to get a copy from the libary or buy one. Sounds terrific. Take care
dusty


All the movement disorder clinics in Quebec bear his name.