I just found out that funding for the social worker for my local chapter of hdsa has been cut. HDSA has directed the all-volunteer boards of these chapters to fundraise the salaries for these professionals who run support groups and offer so much help for HD families. I understand that this is happening all over the country. The services that these social workers provide are invaluable for those of us in the trenches dealing with the day to day difficulties of caring for someone with HD and/or living with it ourselves. To expect that the salaries of trained professionals be provided through local fundraising efforts is absurd and demonstrates how completely out of touch the national organization is with the families who are trying to cope. The social worker in my area has had to resign, because she, like all of us, needs a paycheck she can depend on and bake sales and 5k runs aren't going to raise it. I don't know what will happen to all of the services she provides and the support groups she runs.

I am going to write the national HDSA office to complain about this. I hope you will join me in doing so. Perhaps if they hear from enough of us, they will change this policy.

OMG, as long as I've been on this forum, I think this is one of the biggest moments of shock I have ever had. That is beyond reprehensible, wow

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!

You are not alone - HDSA funding to other COE's has been cut, Birmingham and Baltimore and, I think, Washington/Seattle are among them. In Baltimore the social worker had her hours reduced some time ago.


To quote HDSA and a statement in their current five year plan. Page 4, Stated Goal: "A Commitment to Community Service. Programs like our network of social workers and support groups -------- have a vast reach so many families can utilize them." Say what?

Suggest your letter to HDSA be sent to Vetter with copy to Director/President of the Board of Directors - registered, addressed personal for, receipt requested from each addee and respectfully ask for the courtesy of a reply - that will ensure your is not intercepted by one of the many staffers. Might reference some of the posts on this forum and similar discussions on Hunt-Dis. Make noise, a loud noise, you will do some good.

Fred Lothrop

Unfortunately you are not alone. Other COE's have had funding cut impacting the HD community and access to needed support resources such as HD outpatient clinics and HD experienced and skilled social workers. Birmingham, Baltimore and, I think, Seattle are among them. A quote from the current HDSA five year plan is appropriate . Page 4, Stated goal - "A commitment to Community Service. --- Programs like our network of social workers and support groups -------- have vast reach so that many families can utilize" Say What????

Suggest your letter be sent directly to Vetter and with a copy separately to the President/Director of the Board of Directors. Registered, receipt from addressee requested. I would also respectfully request the courtesy of an answer. Make noise, a loud noise and wyou will do good.

Fred Lothrop