In 2008, I wrote about the Macular Degeneration Association (MDA), a questionable charity whose actual mission seemed to be more about lining the pockets of its founder and his cronies than about supporting macular degeneration research or people suffering with the disease.
The charity doesn’t look any better now than it did then. Here’s an update…
There have been several comments on my previous blog posting from people purporting to have first-hand knowledge confirming my suspicions about MDA.
There is still no evidence that MDA has spent a single penny of the money it has raised on macular degeneration research or programs that help patients living with the disease. Rather, MDA appears to spend all of its money organizing one-day “conferences” and “symposia” all over the country, often “co-produced” by local optometrists, whose purposes seem to be to help those optometrists bring in new patients and pitch “Macula Risk”, a genetic test for predisposition to macular degeneration. Some interesting facts about this test:
- The test is free to patients and optometrists for patients who have already been diagnosed with some form of macular degeneration (insurance or Medicare pays for it). Since these patients should already be undergoing frequent eye exams and treatment, the benefit from this genetic test is minimal at best.
- The test costs $750 for people who have not been diagnosed. Yowza!
- The only people I can find online claiming that this test is useful are people who stand to benefit financially from it.
- I cannot find any reputable macular degeneration organization recommending genetic testing as a necessary, useful component of macular degeneration diagnosis and/or treatment.
I don’t know whether MDA is getting kickbacks from the company that does this testing, or from the optometrists who “co-produces” events with them, or what, but it seems clear to me that somehow or another, these events are money-making endeavors for MDA.
MDA’s IRS Form 990 still aren’t posted on its web site, nor are audited financial statements, or indeed any statements whatsoever of how it spends the money it receives from donors. Compare this to, for example, the American Health Assistance Foundation (AHAF), which posts its Form 990 and audited financial statement and lists the 116 research grants it is currently supporting.
Although there’s nothing on MDA’s web site about how it spends its money, there is a page dedicated to biographies of the people on its “industry advisory board.” This should tell you a lot about where its priorities lie.
CharityWatch (formerly the American Institute of Philanthropy) has evaluated MDA and given it an F, i.e., a failing grade. According to their analysis, MDA spends 10% of its income on legitimate programs and spending $74 for every $100 it raises. CharityWatch expects charities to spend at least 60% of its income on programs and to spend $35 or less for each $100 it raises.
MDA now has a “Forum” on its web site whose content seems to consist primarily of articles reprinted from other web sites without permission.
MDA also now has an “Ask the Doctor” forum on its web site. The last questions in the forum with answers from the doctor were posted in April 2011. There have been 36 questions posted since then which have gone unanswered.
The currently listed executive director of MDA, Donna Auger, is an optician and pharmacy technician who seems to have no training, education, or prior experience which would make her qualified to be the executive director of a charity. Another employee listed on that page is named Danielle Auger. It is not a coincidence that these two employees have the same last name.
The MDA web site is rife with grammar and cut-and-paste errors. It looks quite unprofessional.
Please contact me if you have any information which might help bring to light the truth about this organization. Please share this page if you would like to help me get the word out about why people should not support this organization.
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What kind of information are you looking for? As a patient, I am afraid of these people (like maybe I won’t get the care I need because of the doctors and healthcare people that work with them). Where do you live?
I am looking for information that is not public, for example from people who have worked for any of the organizations or people who are involved.
I don’t think Kelly Sullivan or Dr. Zesiewicz are part of PRF anymore. You should call and ask them. Also maybe Abe Lieberman and maybe the nurse listed on there. (see the link to the brochure above)
How about this?
Larry Hoffheimer has set up at least two tax exempt organizations that relate to MDA. The first is “American Medical Research Organization, Inc.” EIN 201894378, In Sarasota, FL. It collected over a million dollars last year. It seems like only a small bit of it was used for programs. The he has “Macular Degeneration Association” which raised no money except for the $10,000 if received in a grant from the “American Medical Research Organization, Inc” which appears to be where all money collected in the name of MDA goes. It also seems that the $$ that Larry Hoffheimer and family (not sure) and Brian Curro pay themselves comes from this “Macular Degeneration Association” but I can’t say how, as that 990 lists no assets or income other than the $10K. Larry is also involved in a foundation called “Parkinson Research and Education Fdn.” The “Parkinson Research Foundation” also has a 990 on the net. All three are searchable.