Today I received an appeal from Dr. Rosas and Dr. Hersch from the Mass. General Center of Excellence. The letter stated that HDSA has slashed their funding and that in order to survive they were asking for donations. Since most major HD discoveries have come from MGH, I find this lack of support from HDSA appalling. Has anyone else heard similar stories from their Centers of Excellence? This brings me to my subject topic "why does HDSA exist?" Certainly it is not to advance the awareness of HD. Most people have still not heard of it. Certainly it is not to help HD families. I've reached out to them in the past and have not once heard back from them. Apparently they are no longer properly funding our COE's which is the lifeline for most HD families' daily struggles. From what I can see, they exist solely to pay their salaries and hold their "galas". Before I retired, I used to donate $1000 per year to HDSA through the United Way. I feel like I was scammed! Any thoughts?

Howard, I agree ... you were scammed! at least they only got the first (and only) $100 contribution from me.

Joe

Good question.

It all stems from the top - BOD and management. Over the years, have seen HDSA bounce around from "cure" to "care" to "family" themes without any focus or accomplishment.The corporate culture is evidenced when they cut funding to COE's rather reducing expenses. Their Christmas card spoke volumes about HDSA espousing family values with a formal portrait of Vetter and a prominent and obvious pitch to donate. So go figure.

Have been accused of HDSA bashing. However, they keeping bumbling and stumbling over themselves. The lack of attention to detail, mistakes in a Money Survey to gather information from the community about COEs is one example. So be it. Read their published financials and look at the overhead it carries.

In the interest of being open - I use some HDSA publications to the benefit of Ms. America - Understanding Behavior in Huntington's Disease and A Physician's Guide to the Management of Huntington's Disease are given to each medical professional she sees. As a side note - back to corporate culture thing - both those publications, while filling a much needed educational void, did not undergo peer review, rather just an editing process by the staff.

People ask me how they can help - I tell them do your homework - check the Charity Navigator to compare similar non profits, look at national HD associations in England. Scotland, Europe, Australia and Canada. If they want to contribute money, I suggest they donate their income tax refund directly to a Medical Center that does HD research - in our case it is the Baltimore Huntington Disease Center at John Hopkins - or, support a non profit with a sole purpose in funding medical research in HD or hereditary diseases.

Why does HDSA exist? Good question

For what it is worth, that is my rant from the south of Maryland on the 26th of February in the year 2015.

Fred Lothrop

Green backs, Benjies, cash, $.............pharmaceutical companies ???????

Increased profits by a facility having a COE?????

Hmmmm........excellent question.........

After reading a recent thread on the HUNT-DISC forum, I went to Jimmy Pollard's "Hurry Up and Wait".

Jimmy dedicates his book to "the centers of excellence." Then goes on -"There are thousands of them across my United States and thousands more around the world. They are in kitchens and living rooms where wives, husbands, sons, daughters, parents, grandparents and friends care for the people they love with Huntington's Disease." And, "There are centers of excellence in care homes, nursing homes, and specialist homes around the world too. "They are not facilities or programs." (my emphasis). Volumes of insight and empathy in a couple of paragraphs by a cigar smoker who also is a nice guy.

Just think the impact HDSA could have and the good they could do with a corporate mindset that espoused such a view of our world.

So, back to the question - "Why does HDSA exist"

Fred Lothrop

I don't think that they care what perception we have of them. Over the years I have contacted HDSA and our local chapter many times with concerns and not once have they been back in touch with me. I was once a faithful financial supporter, not anymore! I don't know if they read this site, but I doubt it. (maybe they have a troll assigned to it) This is what happens when organizations are run by folks who are not personally connected to their cause. I know that their current CEO is a transfer from the Lung Association. I cannot speak for how many of their paid personnel have actually been personally affected by HD. In about 2009 HDSA cut funding for research to almost nothing. I do not know what it is now. I started another thread a few days ago about this issue. I am going to paste this to my thread to keep both going. I hope everyone here joins in! The only thing that might get their attention is sheer volume. I have been fighting the HD battle for 33 years, first with my wife who passed away at age 33 and now with my daughter who is 32 and in the late stages. As I said, I have not had one minute of encouragement or support from HDSA. They would not even come to bat for us when we faced serious discrimination issues related to HD. It's a shame that so many years after Woody Guthrie's wife founded HDSA that it has come to this. Arlo Guthrie is a neighbor of mine, and he has done an awful lot for Huntington's in this area. HDSA has done NOTHING. So very sad to be left alone by the organization that should be helping us!

Amen Howard. You are not alone.

HDSA receives no financial support from our family. The extent we can, our efforts are focused on the Baltimore HD Center at John Hopkins so we can support people who support us. We make use of HDSA publications that are current, which we pay for, to help educate care providers and as reference for presentations we give.

Have been accused of HDSA bashing, if is what this is, so be it. Not all is well in the Ivory Tower. From my perspective, the introspect of navel gazing means little is be done to support those of us in the trenches.

Fred Lothrop