News update on Larry Hoffheimer, Parkinson Research Foundation, Macular Degeneration Association

The Sarasota Herald-Tribune recently ran this article by Barbara Peters Smith about Parkinson Research Foundation (PRF), its founder Larry Hoffheimer, and another, far more reputable charity with which PRF is competing in Sarasota. The article also briefly mentioned Hoffheimer’s other “charity”, the Macular Degeneration Association (MDA).

Readers of my blog know that I have written about Hoffheimer, MDA, and PRF in the past. In a nutshell, I believe that at best, MDA and PRF are incompetently run charities which spend far too little of their revenue on furthering their missions, and at worst, they are intentionally fraudulent charities whose real purpose is to enrich Hoffheimer and his colleagues rather than to help people with Parkinsons and Macular Degeneration.

I spoke with Ms. Peters Smith at length about the ample evidence that there are problems with these charities. Unfortunately, none of the concerns raised in my blog made it into her article as published. Here is the letter I sent her about the article:

Dear Barbara,

Thanks for the link.

I’m glad to see this getting press, but frankly, I can’t say I’m particularly satisfied with the reporting.

It’s disappointing that you used Charity Navigator as your source for evaluating the finances of both organizations. The due diligence that Charity Navigator does when rating charities is extremely superficial. They basically take at face value whatever the charity says they’re spending money for; this is problematic because dishonest charities frequently misclassify finances to actively misrepresent and exaggerate how much they’re spending to further their mission. The only organization I’ve found that does a sufficiently thorough analysis of charities’ finances to produce reliable, trustworthy ratings is CharityWatch.

I frankly wouldn’t trust a single word Larry Hoffheimer says about how much “Parkinson Place” cost to open and how much it costs to run. Did you make any effort to corroborate the numbers?

A more hard-hitting investigative article might have looked into how the money being spent on PRF “centers of excellence” is actually being used.  Have the recipients of those grants actually done real, meaningful, published research with the money? Or, more likely, is it just a front for “seminars” whose real purpose is to sell PRF merchandise and solicit further donations to the organization? As I wrote on my blog, the seminars hosted by MDA are clearly more commercial than charitable in nature.

It might also have been worth reporting, e.g., how much of a salary Larry Hoffheimer collects each year from PRF and MDA and what fringe benefits (aside from salary) he enjoys, such as free use of company facilities, company reimbursement for travel (for example, PRF is currently advertising on its home page a “Parkinson’s Educational Cruise”; wanna bet that Hoffheimer’s cruise is paid for by PRF?). CharityWatch has published many exposés of bogus charities whose primary purpose was to directly and indirectly benefit their leaders, rather than to further their supposed mission. Judging from your article, you do not seem to have made any serious effort to investigate whether this is the case with PRF and MDA. Or, if you did, that material was all excised by your newspaper’s lawyers, thus removing from the article facts that the public deserves to know before deciding whether to support Hoffheimer’s organizations.

Because you failed to discover, or at least failed to report, any serious problems with PRF, Hoffheimer can now point to your article as proof of the legitimacy of his organization. As such, if there are in fact serious problems with PRF, and there is ample reason to believe that there are, your article has done a disservice to donors and the Parkinsons community.

Regards,

Jonathan Kamens