Update on the Macular Degeneration Association

By | December 19, 2013

A reader of my blog who wishes to remain anonymous has shared with me this update on the Macular Degeneration Association, about which I’ve written previously, and asked me to share it on his behalf. Below is what he sent me, in full and without modification.

In response to your blog, I wanted to offer the most recent updates on the Macular Degeneration Association. Please know that I do not work for the Macular Degeneration Association, Parkinsons Research Foundation, Larry Hoffheimer or any other organizaiton he might be personally or professionally invovled with. I have no personal motive for providing this information. My knowledge of the Macular Degeneration Association and Larry Hoffheimer comes mostly from external sources. I am offering this update in good faith to those following the Macular Degeneration Association.

[MDA Leadership]

Let’s start by reiterating the leadership of the Macular Degeneration Association

Readers should know the Macular Degeneration Association is controlled independently by Larry Hoffheimer. To date, Mr. Hoffheimer refuses to create a Board of Directors. This has already been mentioned in your blog. Next, the financial management of the Macular Degeneratoin Association is completely outsourced. This means that no single employee has access to view, manage or manipulate the financial portfolio of the Macular Degeneration Association. This lock and key strategy is aligned perfectly with Larry Hoffheimer’s refusal to establish a control board. Larry wants absolute control over all financial, operational, administrative, marketing and management directives within the organization. It is important for the viewing community to know that underlying employees are mostly powerless to make any decision regarding these matters.

Although there have been some questions raised about the integrity of certain employees within the organization, let it be known that most of the employees working for the Macular Degeneration Association are actually kind hearted people who truly believed in bringing a positive cause to the community. It’s unfortunate they were blinded into working for a less than honorable Chairman. Viewers should avoid using job titles to index the legitimacy of this organization because they are absolutely meaningless. Larry Hoffheimer delegates the most impressive job titles to every single role within the organization because doing so is part of his big name big image publicity package.

[Regeneron Relationship]

Now here’s a relationship hardship the organization has recently absorbed


Regeneron is a multi-billion dollar pharmaceutical company and seems to be the largest sponsor of the Macular Degeneration Association. Regeneron administers a grant program that considers requests from qualifying organizations. As with most grant programs, applications can be submitted annually during the application period. Qualifying organizations can submit and resubmit for consideration during each period.


It appears at some point within the last three to five years, Larry Hoffheimer established a positive working relationship with Regeneron. For reasons unknown, Regeneron became favorable to sponsoring the Macular Degeneration Association. This sponsorship mostly allowed MDA to fund educational programs throughout the country.

[Regeneron 2011/2012]

MDA submitted grant application[s] to Regeneron for the operating year [2012]. MDA requested more than $100,000 in funding. The pretense of the application[s] was likely to fund educational programs in different cities throughout the United States. Regeneron [AWARDED] the requested funding which totaled more than $100,000 in grant assistance.

[Regeneron 2012/2013]

MDA submitted grant application[s] to Regeneron for the operating year [2013]. MDA requested more than $300,000 in funding. The pretense of the application[s] remained unchanged from the previous year but with many more programs planned. Regeneron [AWARDED] the requested funding which totaled more than $300,000 in grant assistance.

[Regeneron 2013]

It appears earlier this year [2013], Regeneron levied some kind of accountability audit against the MDA. While the actual results of this action remain unclear, sources suggest the audit raised questions and failed to completely satisfy Regeneron.

[Regeneron 2013/2014]

MDA submitted grant application[s] to Regeneron for the operating year [2014]. In a bold move, Larry Hoffheimer requested more than $900,000 in funding. The pretense of the application[s] and stated reasoning for such a large increase are not known. In a reverse decision, Regneron just recently [DENIED] all requested funding to the MDA [2014].

It seems Hoffheimer was advised to reconsider the amount he requested before applying. He evidently dismissed that advice and ordered the application forward. Sources indicate that following Regeneron’s rejection, Larry panicked causing even more damage to his relationship with the company. In the most unprofessional manner, Hoffheimer expressed his disappointment by directing a fury of insulting and destructive remarks at Regeneron Executives. These antics probably sealed the fate of his relationship with Regeneron.

[Regeneron/End Result]

MDA is now in serious financial jeopardy and the future of the organization is bleak. The latest information indicates that Hoffheimer plans to convert the Macular Degeneration Association into a newsletter and website only effort. At present, MDA employees have been notified their jobs are being eliminated in the upcoming weeks. It is believed that PRF will continue to operate.


Earlier this year MDA changed its web presence from maculardegenerationassociation.org to macularhope.org

Although the actual reason behind the name change is not entirely known, it makes more sense to have a memorable web address. I guess they call that Modern Business 101.

[Hard Lesson Learned]

Greed is bad.

Print Friendly

6 thoughts on “Update on the Macular Degeneration Association

  1. Blog Viewer too

    PRF is advertising to fill two positions. One is for a physician and the other is for a physical therapist. Apparently they will both be able to practice in PRF’s facility without paying rent and will have the added benefit of free access to personnel and office equipment. This will be fine if they are providing a charitable benefit to the community. However if these providers do as the current and previous doctors did it is hard to see what the charitable benefit is. The current physician is paid $25,000 to act as medical director. As medical director he sees only patients who qualify him to receive the highest reimbursement allowed from insurance. Other patients have to be seen by other doctors in the community who pay rent, overhead and taxes. Most importantly there is no sliding scale or free care for patients in need, and there are many in need. It seems that the physicians and other health care providers that agree to work this way with PRF are taking advantage of the public tax payers and public donors. Wouldn’t all doctors prefer to earn their money without having to pay corporate taxes and operating expenses? Clearly they are getting around IRS Rules by having the providers be employed by the university of south Florida but it is Larry Hoffheimer and his nonexistent board who are controlling these employees. One needs only to look at the employment ads that PRF has placed including the one on it’s website to see that PRF Is portraying these professionals as their own employees. Yet no charitable benefit is provided and what’s more the current and future physicians will not be able to admit patients to our local Sarasota hospitals. Thus the burden of all the follow up on patients who require additional care, admittance and follow up care at a hospital including those who cannot afford to pay is born by other local physicians who do not receive stipends and free overhead at taxpayer expense. This is just one more example of Larry Hoffheimer’s affinity for bending rules in the medical and charitable communities and exerting unchecked control over PRF. Why not provide free healthcare to Parkinson’s patients and advertise it to the masses? They’ve got the money.

  2. Md Hamidur Rahman

    Dear sir,

    I am suffering from Parkinson. my age 39 years. how can i live better life? please help me.

    Your kind cope-ration in this regards will be highly appreciated.

    Thanks & Best regards
    Md. Hamidur Rahman
    From Bangladesh

  3. Blog Viewer

    Just read this update.
    Interesting to say the least.
    Anyone know what the Macular Degeneration Association is doing these days?
    Larry Hoffheimer still rolling up first class and eating aged steak on other peoples money?

  4. Senior Senore

    Lawrence Hoffheimer took weekly first class flights and steak dinner with that money as well.


Leave a Reply

Your email address will not be published.