Has anyone else noticed HDSA is touting a "top rating" from CharityWatch? A check of CharityWatch shows HDSA with only a B+ rating and the rating by Charity Navigator is still only three stars out of four or a B. Goes along with their self proclaimed status as the premier non-profit in HD research and the world’s leader in improving the lives of everyone affected by HD. Guess their world does not include the south of Maryland as Ms. America quality of life has not improved one iota since their proclamation being the world leader in caring for pHDs.

I also don't recall ANY improvement (or any assistance at all) here in NC either.
I wonder what their rating would be within the HD community. I guess you can't give a grade to an absentee.

I just went to the hdsa.org web-site and it had a bandwidth error...

"Bandwidth Limit Exceeded
The server is temporarily unable to service your request due to the site owner reaching his/her bandwidth limit. Please try again later. "

I have to say, I believe there is room for HDSA to improve on resources and getting the word out on this disease, which spurs advocacy. I guess that they spend $16 in order to raise every $100, which is why they get a B+ rating, so that's not bad.

But the issue I have with them is that they don't think outside the box enough. It seems to me that most of the advocacy is focused on leaning on families like us who are affected by HD. I am sure many of us like to volunteer be we have our hands full, and we also don't come from families with a lot of money to spend on fundraisers for the HD cause. The idea is to get major money infused into the campaign in finding a cure and not hitting up the families who struggle already emotionally and financially. If I happen to be a personal friend of the guy who owns Papa John's Pizza, I guess that method works, but I don't know John Schnatter, so that method does not work for most of us.

So what I am getting at is this... HDSA is missing out on a major opportunity in spreading the word throughout NIH and other disease forums, nationally and globally, in stating what is the obvious to me... a cure for HD is a cure for all neuro-degenerative diseases (in due time). It's that simple. Research and identification of the gene appears to be far more advanced with HD (going back to 1994) than any of the other diseases.

If we get things rolling with a cure by way of RNAi for HD, the spillover effect to Parkinson's, ALS, Alzheimer's... is simply enormous. Vetter & Company should be hitting up the big big donors and advocates and not so much relying on walk-a-thon's. Actually, the walks are more about local support in helping local chapters keep the lights on for bi-monthly support meetings and donuts, most likely, so that may not be fair criticism.

But I think you get my drift. They need to think bigger and they need to get a lot louder in calling out these paid-for politicians in Congress who won't get behind the HD Parity Act. Being "nice" and passive isn't going to get us where we want to be in an expeditious fashion. I have occasional correspondence with the counsel working the Parity Act as to what is going on, and it's an embarrassment (the Congressmen) and those nefarious folks should be called out. They lack a soul and the public should know about it.



Edited 2 time(s). Last edit at 06/30/2015 08:20AM by TylerFitz.

Amen Brother,

HR 678, the parity act, was probably their one time on the big stage and they stumbled, badly. . It was huge deal as it impacted on the entire community and given the current political environment, it will sometime before that window opens again,

Corporate culture, at least from my view, seems to be their block to getting things done. .Have beat the drum for some time, but have seen little, if any, change.

Amen

I was at this latest convention. And I found it pretty hilarious when Vetter announced in one of her speeches that because of all of our amazing fundraising, that they have been able to get the HDSA's debt down from $4 million to somewhere around $200,000.00. It make me feel so good inside to do a bunch of charity work, to pay the HDSA's bills.

Just to make feel good about your charity work, a tariff is levied y HDSA on each dollar raised by the community by "Walks" and other funding raising efforts unity in field to support the Association's overhead.

Washington DC's motto on their license plates " Taxation Without Representation" may be appropriate for those getting fed up with the "Premier Non-Profit" and "Leader in Research".

must be good money for the board members of such orginations.

NC HD Reach has a new full time chairman

HDSA is adamant that they are only focusing on research. I wonder why there isn't a secondary charity that it's sole focus is helping the people and families that are actually dealing with HD on a daily basis. At least it would give individual donors a choice of where they want their funds to go.

Sadly, it's those families dealing with HD, who often times have no disposable income, who are getting hit up for the local fundraisers as well as HDSA related fundraisers. Just because I go to a national convention, does not mean that I have a lot of money. I in fact do not.

BrentM30 Wrote:
-------------------------------------------------------
> HDSA is adamant that they are only focusing on
> research. I wonder why there isn't a secondary
> charity that it's sole focus is helping the people
> and families that are actually dealing with HD on
> a daily basis. At least it would give individual
> donors a choice of where they want their funds to
> go.

Whoa! Good money for the BOARD MEMBERS? Steve was on the board for many years. He had to pay expenses to attend meetings and donate $2400 a year just to serve on the board. It was a financial sacrifice for us, not a financial windfall.

I have had people ask me what the board members are paid. Nothing, board members are not typically paid for serving on nonprofits.

Also, the cost of fundraising is way higher than 16 cents on the dollars. Overhead is high. Go to GuideStar, join for free and look at the 990s filed by HDSA.

Marsha Wrote:
-------------------------------------------------------
> Whoa!

are you telling me that the chairman and other officers are not paid!

That is correct. In fact there is a minimum amount that each board member is required to contribute. When I joined the board it was voluntary and later became required. Only the staff receive a salary. HDSA offers to reimburse the expenses of board members when they are required to be fly somewhere but I'm pretty sure that most board members just absorb it. The executive board is required to travel more often so I would expect that they would ask for reimbursement but I don't know that for a fact.

Steve

[hdsa.org]

Yes, that's the 990 that nonprofits are required to file with the IRS. As you can see on Page Seven, the board of directors receives no compensation.

On page 8, it states that Louise Vetter is making roughly $236,000 from HDSA . Plus an additional $40,000 from other sources. The only six people that are paid by HDSA are making $894,000 and an additional $115,000 from other sources.

I think Marsha and Steve are referring to a Board of Directors for HDSA - no compensation for serving - not clear if that is the Scientific Advisory Board or the Board of Trustees identified on the HDSA web site. Believe Brent is talking about Vitter and her staffers, 19 listed on the web site to include an all important Information and Fulfillment Aide.

I think that a lot of people question if the heads of HDSA should be making that large of a salary . I'm not saying that they should or shouldn't be getting paid that much money. I have no idea what they do on a daily, or weekly basis. I think people that are struggling with HD everyday get frustrated that they see HDSA pull in 7.1 million in 2014. And they pay six people close to a million in salaries. And the only time they help anyone financially is a one time only reimbursement to go to a convention. I really think that people need a second charity fund that is focused directly on helping families that are having a hard time. Then at least when someone decides to donate, they could choose which fund they want their money to go to. In doing local fundraisers for HDSA, I have heard people ask many times if the money will be used for the families in their community. I think people are more likely to donate more often if they can see a direct impact to a local family or group. Maybe it seems that way because I live in a smaller city, where people don't have a lot of expendable money. If a family has an HD related emergency come up and they call the HDSA for assistance, they will be told that HDSA doesn't work that way. And that you should do a separate local fundraiser for your situation. But if you do that, people that donate feel like you are hitting them up for donations too often. Which makes them not want to donate a second time. Or less than they might have otherwise. Also the people doing the fundraisers are getting burned out because they are putting in all this work on organizing fundraising, and they don't see any change. People want to see that they are making a difference. Especially after doing fundraisers for years and they just don't feel like it is making a difference.

I agree...
NC has a nonprofit called HDReach, I have been on their mailing list for a year or so. I get calls to attend a monthly meeting in which time I ask what are they actually doing to help.
during the call yesterday I asked for thier official lisiting as a nonprofit so I could find thier 990 since HDReach was a DBA name. they claim to be providing aid to hundreds of people.

IF such an orginization exisited that did help families I would consider making them my final benificary (after the wife was cared for). It would be interesting if a orginization could provide the trust services to care for HD patients when their caregiver passes

I'm not going to get in an argument with people who have preconceived notions about HDSA and HD Reach. I do want to point out a couple of facts. HD Reach has a new full time director because she resigned her position at Duke, relinquishing her psychiatrist's salary there.

HDSA salaries are New York City salaries, which are notably larger due to the cost of living. I don't think anyone anywhere is "slopping at the HD trough". I think everyone is trying to do the best job they can. You may not like what they're doing, but I think their hearts are in the right place.

Will

As for HDReach, I'll admit I have had very little contact with them. I have called multiple times to request "help". So far there is nothing within thier capibility. the best offer so far has been to attend the monthly meeting

This posting and the email this week about Mary "leaving" Duke just peaked my interest in the compensation for a nonprofit. The latest filed 990 was for 2013