Help 4 HD News Channel Review - HDSA

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Tuesday, March 27, 2012 - Help 4 HD News Channel launched its first broadcast with one of the most ramped-up and controversial interviews ever done in the history of Help 4 HD radio with Louise Vetter, CEO of HDSA (Huntington’s Disease Society of America). The show was eminent after reading HDSA’s Person of the Year 2011, Gene Veritas’ blog titled: It’s time for the Huntington’s disease community to speak out – and HDSA is listening, he posted on February 21, 2012...

“HDSA’s current budget is approximately $8.5 million. According to the 2009-2010 annual report 26 percent of the budget went to family services, 20 percent to fundraising, 20 percent to chapter development, 17 percent to education, ten percent to management and general expenses, and just seven percent for research. Those amounts are a far cry from the early 2000s, when HDSA annually spent millions on research."

The HD community went into hyper shock at the information Gene reported, especially about the 7% allocated to research. But wait, let's back up for just a moment... in January 2012, HDSA published their "Draft" Strategic Plan 2012-2016 which according to the Introduction took 18 months to develop. A 39 page document outlining seven core directives with new programs to be launched in the next five years was sent out via email asking for feedback from the community. Although this was presented to the HD community as a draft, it states in the introduction "the final plan was published in early 2012". It seems to be more confusing than explanatory considering the fact that HDSA has been in dire financial trouble since before 2009 which they allude to by stating they must now operate in a “fiscally responsible manner” (Goal VI). How could they plan for so many new programs if their burden of debt is so great? Another troubling statement is that their mission has changed… What?? Their mission is now one simple statement: To improve the lives of people with Huntington’s disease and their families. My personal opinion: That is not a mission statement which gives me much hope. But HDSA states that their organizational purpose as described in the Bylaws are as follows: (Where are their Bylaws anyway?)

· To promote and support research and medical efforts to eradicate HD (not fund research)

· To assist people and families affected by HD to cope with the problems presented by HD

· To educate the public and health professionals about HD

On February 29, 2012 another blog sparked attention like a wildfire by James Valvano, titled: Think before you walk! It generated a record 95 comments from the community and challenged us to question where our hard earned fundraising dollars are going. Again more comments and questions began pouring into Help 4 HD International and many Facebook groups asking why hasn’t HDSA been transparent about the fact that they stopped funding scientific research in 2009, why only 7% of their annual budget was allocated for research and where are their fundraising dollars going? Well, the answer to that is… they did… it’s posted on their website, Annual Report 2009/2010, which I might add it’s not easy to find. At that point I decided to invite Ms. Louise Vetter, CEO and Mr. Don Barr, Chairman of the Board of Trustees from HDSA to come on Help 4 HD radio for a question and answer session to see if we could get some straight talk about the financial status of HDSA, what’s happened to their research initiative, and what caused HDSA’s research to drop from 23% in FY 2008-2009 to 7% in FY 2009-2010? Mr. Barr declined to appear.

During the broadcast with Louise Vetter the community was buzzing in the chat rooms with questions. Is HDSA funding research or no research? There was much discussion about the financial state of HDSA and is HDSA still delinquent on payments to their COE’s (Centers of Excellence) and research grants? Chapters and Affiliate business was also brought into the session topped-off by many requests for the New Physicians Guide to be posted on the HDSA website in PDF format (which they did publish this week). The great resounding question of the evening: Where has HDSA’s research gone and where is the money from Team Hope Walks and other events going? The answer is, HDSA stopped funding research in FY 2009-2010 and your fundraising dollars do not go to current research. Those dollars go directly into the general fund for the overall operations of the organization. HDSA is funding zero scientific research right now, but there is something called “readiness” for research that has taken up 7% of the 2011 annual budget ($569,877) which Louise alluded to as their Diplomat Program, dialogue with the Coalition for the Cure and to support clinical trials. Interesting…That cost more than half a million dollars?

Charity Navigator rates HDSA as a 2-star charity. Not good! But, according to Ms. Vetter their rating was low because Charity Navigator didn’t see HDSA’s 990’s filed on their website. But after further investigation, the 990’s posted on HDSA’s website are from calendar year 2008, and the income and expense information posted on Charity Navigator is FYE 2009/2010. Bottom line, Charity Navigator deducted points from HDSA’s accountability and transparency score for not publishing on their website its audited financial statements for the fiscal year represented by the most recently filed IRS Form 990. As stated by Charity Navigator: “It’s important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well.” See for yourself what Charity Navigator has listed for HDSA. http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=13075.

Many requests came into the chat room for current HDSA Annual Reports and audited financials. Hundreds of emails (300+), phone calls and messages have been bombarding Help4 HD International. Here are some highlights of the show with comments which continue to stream in every day from our community:

Transcript Reference: (10:04 & 10:29)
Link: LOUISE AND TEAM HOPE WALKS

Community Comments:

"If they just said that all the money coming in from these walks go to the mission and their programs and overall bills, people would understand, so why say it's going to research if it's not?"

"HDSA should be more transparent about the fact that my fundraising dollars are not paying for current research."

"I can't believe this organization donated only 7% to supposed research and now we know that there's no separate fund??? What are they doing with the rest of the percentage of money that comes in?"

"I am so angry that all along I have been under the misguided impression that I was raising money for research and the cure. HDSA has not explained that to us."

"7% to research is a travesty. I will not be raising money for them again."

"Did I hear her right? Why did she say that there is no fund for research when someone from the Team Hope Walk donates? This is not what our Regional is telling us and it doesn't say that on any paperwork. We are told that all the money we bring in goes to research and it says right on the Team Hope Walk documents. I don't understand!"

"I will never give another penny of my money and I will tell everyone I know that they are not doing research as they said. She [Louise] even stated that all of the fundraising money coming in doesn't go into a research fund. There is no "allocated" fund and people are still walking in these walks thinking that the money is going to research. This is sick."

*Author’s Note: I have received new emails from HDSA event organizers which state *All proceeds support HDSA’s fight to improve the lives of people affected by Huntington’s disease… instead of funding research for the cure… which still doesn’t explain what they are raising money for.

Transcript Reference: (17:19 & 17:42)
Link: LOUISE AND PAST DUE GRANTS

Community Comments:

“This is the first I have heard that HDSA was paying for delinquent grants for the Centers and research. I am appalled at their secrecy and mismanagement of millions of dollars.”

“Is it really fair to blame HDSA’s financial hardship on economic times?”

“If HDSA was in financial trouble, why wouldn’t they tell us? The community would be more willing to help them if they didn’t lie about it.”

*Author’s Note: People, your fundraising dollars go into the general operations fund for overall operations to be allocated to whatever HDSA’s chooses including paying off their delinquent grants per Louise (See transcript 48:42–51:00).

Transcript Reference: (14:51 & 15:08)
Link: LOUISE AND THE CENTERS OF EXCELLENCE

Community Comments:

“HDSA should concentrate on making the Centers better before adding more.”

“What percent of dollars raised go into research, caregivers, HD etc. vs what % to administration, etc.?”

“I have been told by HDSA that they do not pay for the social workers at the Centers of Excellence. It’s up to the Centers to pay for their own.”

Transcript Reference: (4:59 & 5:17)
Link: LOUISE RE: UCSF SYMPOSIUM

Community Comments:

"Is the HDSA or Louise saying that the researcher at UCSF is incorrect? Why did he specifically say that the HDSA had stopped funding research in 2009? Why would Louise say otherwise?"

“I have heard that some researchers are concerned that the HD community is raising money for HDSA “research” but the researchers are not getting funded for new research from HDSA which is dishonest.”

*Author’s Note: Dr. Steve Finkbeiner explains that HDSA research stopped in 2009 at the 9^th Annual HD Symposium in SF for the conclusion of the symposium. There is so much more research going on.

Transcript Reference: (1:09:28 & 1:09:53)
Link: LOUISE AND NO NEW RESEARCH

Community Comments:

"I listened to Louise and had to listen three more times. So much of what she claimed about the HDSA funding a new research program is vague and why can't she tell us how much money is in the fund?"

“I won’t donate to them anymore. I will go to places I know that are actually doing research and I will request the HDSA’s financials.”

“When will they post the researcher’s contact information and what these researchers are working on as Louise promised she would do the day after your show?”

“Why is it difficult for you [Louise] to define research?”

"Why doesn’t she [Louise] know the dollar amount going to research and why does she have to wait for the final figures? She is not presenting herself and HDSA as sincere.”

“Isn’t HDSA a non-profit public organization and shouldn’t they be telling us what they spent on research in the last fiscal year?”

“Did 2010-2011 contributions to research/care giving drop below a “legal” charity level?”

Other comments from the community:

“Why won’t Louise disclose her salary when it’s already public?”

“I have replied to the HDSA’s Strategic Plan a few times, but I haven’t heard back from them.”

“The Physician’s Guide should be up on their site. It wasn’t right for her [Louise] to say that it was made for doctors when we are the ones doing so much of the educating. She made it sound like it was more important to recruit doctors than helping us!”

“Why so vague on so many questions and your answers?”

“How can we confirm anything with the Board when we can’t event contact them?”

“Why has HDSA taken down the Coalition for the Cure scientists contact information? I thought Louise stated she would make sure we could contact them.”

*Author’s Final Note: This was a very interesting exercise trying to decipher the facts from fiction with this transcript of the Louise Vetter’s interview. Much of her statements were focused on evading the problem questions with smooth answers deferring attention away from inquiries relating to current research dollars and when they stopped funding research. The question of her salary was never answered which is public information, or should be, by law, HDSA is a non-profit, unless she is not actually being paid by HDSA... Some questions were directly answered, but many were not and contradictions were made like; none of the Team Hope Walk funds went to pay delinquent grants. That money goes into the general fund. Well, where does the money come from to pay for the delinquent grants, Louise? Well, it comes from the general fund… Really?

In my opinion, the statements she made about the 990”s and the many, many charity sites was quite askew. It was obvious to me when I looked into it for a second, that HDSA did not post the current financial information, thus the low rating. That’s easy to fix, cough up the current IRS filing, HDSA! This is public information, folks! We should be demanding that they produce the information by which we can decide for ourselves that they are worthy of our blood money. Oh, I’m going there… HDSA exists because we do… the Huntington’s disease community have sweat blood for their families, son’s and daughter’s for years to build the house that is HDSA and they have the gall to say, “I can’t tell you this or that number”. That’s a bunch of hooey! I know that many of you are fuming mad as you should be. HDSA has gotten away with this game for many years, but I think the gig is up and the community is no longer going to bend over for it and the community is starting to realize that honesty and transparency are only words until they are exercised with compassion and integrity AND proof!

But, something good has already come from this interview with Louise, HDSA published the new Physician’s Guide in pdf on their website. Yay! Well, I know I have my work cut out for me if I’m going to continue reporting for Help 4 HD News Channel. What do you think? Shouldn’t we keep asking the questions?

One comment from a community member which had the most profound impact on me personally was, “We had so many years to get this research done and what if all of that money was going to research, we might have a treatment or a cure by now!!” God, my heart broke when I read that comment because I have just started on this HD journey with my son, Jimbo. What if??

So let’s go forward and ask the questions. Let’s walk for HD, but let’s know where our fundraising dollars are going before we do that. It’s fun to walk and have events and meet each other at gatherings. That’s what gives us hope and courage.

Contact: Melissa Biliardi, melissa@help4hd-international.org