Fraudulent charity warning: Macular Degeneration Association / American Medical Research Organization

By | April 25, 2008

April 25, 2008

Bill McCollum
Attorney General
The Capital PL-01
Tallahassee, FL  32399-1050
E-mail: ag.mccollum@myfloridalegal.com

Dear Mr. McCollum:

I am writing to bring to your attention a fraudulent charity that is operating out of Florida and scamming well-meaning individuals.

I received a solicitation yesterday for an organization calling itself “Macular Degeneration Association” and which identifies itself as “a mission of,” i.e., a front for, the “American Medical Research Organization”.  The address given for the organization is 420 Beach Road, P.O. Box 20256, Sarasota, FL  34276, and the telephone number given is 941-870-4399.  The charity claims to be registered in Florida with the registration number CH18753.

Here is how I know that this organization is a scam:

  • There is no presence on the Web for the “Macular Degeneration Association” or the “American Medical Research Organization”.  No reputable charity operates without a Web site.
  • The solicitation provides no email address for contacting the organization.  Again, reputable charities always provide a mechanism for contacting them on-line.
  • The telephone number is bogus.
  • The mailing address is a condominium or apartment building, not an office.
  • There is no evidence on the Web that any organization or researcher receives any financial support from this either MDA or AMRO.
  • The organization does not appear to have either a board of directors or endorsements from any medical professionals.
  • The president of the organization according to the solicitation letter, Michael Alicea, does not appear to be any sort of medical professional.  The only evidence I could find on the Web for what he does with his time seems to suggest that he spends quite a bit of it visiting night clubs in the Sarasota area.
  • The contact for the organization listed on its IRS Form 990, Lawrence Hoffheimer, also is not any sort of medical professional; it appears that he is a lawyer.
  • There is no indication in the solicitation letter of how the organization spends the money it raises.
  • The organization has not been evaluated or rated by the American Institute of Philanthropy.
  • The solicitation letter engages in the known tactic of slipping in a little piece of “educational material” at the end of the letter, “P.S. Be sure and make regular eye examinations a regular part of your efforts to maintain a health lifestyle”, so that the cost of the solicitation can be counted as a “program expense” on the organization’s financial reports.

If you investigate this organization more closely, you will almost certainly find that virtually all of its “program expenses” consist of the cost of sending out fundraising letters, and that the rest of the money it raises is used almost entirely to pay salaries to Michael Alicea and others affiliated with the organization.

Please put a stop to this fraudulent activity.

Sincerely,

Jonathan Kamens

CC: Martha Coakley, Attorney General
Commonwealth of Massachusetts
E-mail: ago@state.ma.us

CC:    Daniel Borochoff, President
American Institute of Philanthropy
E-mail: aipmail@charitywatch.org

CC:    MacDonald Curran, Chairman
AMD Alliance International
E-mail: info@amdalliance.org

CC:    Chip Goehring, President
American Macular Degeneration Foundation
E-mail: amdf@macular.org

CC: Edmund J. Aleksandrovich, President
Macular Degeneration Foundation
E-mail: ed@eyesight.org

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52 thoughts on “Fraudulent charity warning: Macular Degeneration Association / American Medical Research Organization

  1. Pingback: Updated on the Macular Degeneration Association « Something better to do

  2. Pingback: What’s the Macular Degeneration Association up to nowadays? « Something better to do

      1. jik Post author

        Correct me if I’m wrong, but I believe all that proves is that she is no longer a registered nurse. Not only that, but it only proves that she isn’t a registered nurse in Florida.

        Is anyone claiming that she is currently a registered nurse, as opposed to just a nurse?

        It seems to me that even if a trained nurse allows her “registered nurse” license to expire, she is still a nurse.

        Reply
        1. John

          The word “nurse” is a legally protected term in the state of Florida and only those with a license can use it legally otherwise it is a misdemeannor regatrdless of whether you went to school for it or not. $1000 fine for the person using the word ad $5000 for the employer (felony).

          Reply
          1. John

            And yes, if you google her, you will see many instances where she claims she is an RN, It’s sad that no one cares. The state can save a lot of money by just not providing a certification program for healthcare providers since we all think it’s not important. Really, no one seems to care about this. Go PRF!!

            Reply
  3. John

    I am a patient who read about the new “Parkinson’s Place” that is advertised by the Parkinson’s Research Foundation and Marilyn Tait who I liked (until now) very much. I decided I wanted to make a substantial donation so I researched some things. Everything I found just led to more questions. The tax returns make it look like there are at least four, maybe five, non profits that are set up. I can’t figure out why there are at least two for each organization but clearly 80 percent of the money collected goes to fundraising and admin. expenses including over $140K for Hoffheimer and his family businesses. Marilyn Tait has been advertising herself as a nurse but it turns out she’s not and that, dear friends, is against the law. Maybe that’s why she left SMH — maybe she was fired for lying to the patients. If you go online, you can see all kinds of things she has written (even in nursing magazines) and she doesn’t have a current license. Somebody should take her to jail – for the protection of patients like me who want to know that the people helping us are who they say they are. This guy Larry Hoffheimer seems a little crazy. I heard he has been harassing people, calling people names, lying, threatening people who don’t want to work with him. I also checked into the deep brain stimulator program because I thought it might be an option for me and was told that I would have to go out of town to get the surgery because the guy who does it here in Sarasota lies to patients and makes them think they are good candidates, and then when he gets them in the operating room, he only does half the surgery and then says the patient is a bad candidate. That really scares me. Why would the hospitals let that happen? Oh, and guess what, this surgeon is on the PRF advisory board. They do have a doctor from USF who works for them, I bet PRF gives him a bunch of $$ or maybe he has a lousy reputation too.

    Reply
    1. Ltech

      Great post John. As someone who was involved in the OR @ SMH for many years (until retiring last year) I can 100% verify every word you posted is absolute fact and well known on the floors. The dirty little secret that has been well kept by SMH and those involved is no longer private. I feel very sorry for all of those patients and caregivers who put their trust and hopes for a better life in the hands of these individuals. However, knowledge is king and the truth will set you free!

      Reply
      1. John

        The PD Comprehensive Care Center is wonderful and has NOTHING to do with these other people mentioned here. If Ltech wants to see the behavior described here end, call the Sarasota Herald Tribune or contact Jonathan Kamens, who runs this blog.

        Reply
        1. jik Post author

          How is he supposed to contact you? You’ve provided no contact information here, and the email address you provided with your comment (which is not published) is invalid, so I can’t arrange for you and him to get in touch with each other.

          Reply
          1. John

            Sorry about that. I did not realize I had to type in something on the yahoo site, but I did go and do that and they said my email will be active again in 24 hours. Perhaps then you could help Ltech to contact me?

            Reply
          1. jik Post author

            That email address does not work:

            <german12345@yahoo.com>
                (reason: 554 delivery error: dd This user doesn’t have a yahoo.com account (german12345@yahoo.com) [-5] – mta1350.mail.mud.yahoo.com)

            Reply
  4. M. Hale

    My husband has m.d. I am starting research into trials and research
    organizations. Which ones can I trust?
    Can you please send this to whom it may concern.

    Reply
  5. Steve Wilson

    They are now operating from 22512 Gateway Center Drive, PO Box 1952, Clarksburg, MD 20871-1952. While the BBB seems to consider them an accredited charity, I won’t give time the time of day. This is just another scam pretending to be a worthwhile charity.

    Reply
    1. jik Post author

      Actually, that’s the address of Macular Degeneration Research, which is completely separate from Macular Degeneration Association. Having said that, Charity Watch gives MDR a D grade, only slightly better than MDA’s F grade. If you truly want to support a charity that’s combating macular degeneration, I’d suggest Prevent Blindness America, which Charity Watch grades A-.

      Reply
  6. jik Post author

    As of December 2011, CharityWatch has added MDA to its charity guide with an F grade. According to CharityWatch’s analysis, MDA spends only 10% of its total expenses on charitable services (CharityWatch considers anything less than 60% to be unreasonable), and spends $74 for every $100 it raises (CharityWatch considers $35 or less to be reasonable).
    When a charity’s service expenditures are that low and its fundraising expenses are that high, the odds are pretty good that the charity has been set up as a front whose real purpose is to enrich the people who created it and their cronies.

    Reply
  7. koi

    I checked MDAs website – it’s pretty slick but no info about the board, no tax info, no grants.

    These guys seem to be into organizing cruises and having a good time. Kind of parasitic.

    Reply
  8. justin h

    I ran across this bunch and saw something new. The Brian Curro fellow is out. By his linkedin profile, he is now running the Parkinson’s disease arm of the charity. The Macular Degeneration Association is now headed by some Donna Auger woman, who’s last work seems to have been a pharmacy technician at Walmart, its not even funny. http://www.linkedin.com/pub/donna-auger/13/ab2/826. When I used google to look for them after getting their mail I saw another group out there called American Macular Degeneration Foundation http://www.macular.org/. They look like they are in massachussets and they looked fishy too, so I asked my sister in lawwho works in a charity about how to do research on them. She turned me on to guidestar website http://www.guidestar.org. Sure enough you can get tax info. I can’t find macular degeneration but that American Macular Degeneration Foundation group has some old taxes on the site. The leaders have over $400,000 in loans to themselves for things like home imporvement. Shame! I checked out the American Health Foundation and at least found a lot of stuff about how they spend money on guidestar. there is a lot of research and they spend about There are other groups like macular degeneration foundation that look ok, but small. and Foundation Fighting Blindness that doesn’t have much on guidestar, but look like the biggest one of the bunch, the american health foundation and foundation fighting blindness are my picks. American Health Foundation has a lot of extra stuff on guidestar, foundation fighting blindess doesnt have much. Foundation Fighting Blindness looks like it makes the biggest grants overall though.

    Reply
  9. Jay

    I thought the letter I received from MDA to be amateurish; The red flag to me was the lack of any specifics of how MDA is helping people. I also thought that having an umbrella organization (American Medical Research Organization) appeared strange. I did a search – your link popped up and I read your posting. I visited their website and noticed the “parkinson” (HTML) tags on the website (how sloppy – that tells me they copied another wedsites’ coding and then only half way modified it). Similar to their letter, there was a real lack of information there. I then read the responses to your posting. That confirmed all I needed to know about MDA and the Parkinson’s Research Foundation. I wonder how many other “foundations” there are that are linked to these guys.

    Reply
  10. concerned grandson

    google mr curro’s name, and you will find multiple myspace and facebook accounts as well as your fraud warning. on one myspace, there is a huge Marine advert/banner. I didn’t read too far into it, but if he’s soliciting funds and claiming a marine affiliation, he’d better hope he really has a service record. there are also multiple accounts on all manner of free sites that show the same man (sometimes pictured w/ a beer can) claiming to be a personal trainer and the head of different companies and ventures. if the pictures weren’t there, i’d have my doubts, but this is the same person again and again. i don’t know of any reputable director of a charity this is also the director of another charity and is a personal trainer, marathon runner, website banner creator, etc. thanks again for your work on this.

    Reply
  11. concerned grandson

    In removing my grandparents from over 50 solicitation lists, I found that the Macular Degeneration Association and the Parkinson Research Foundation have the same Florida PO BOX and that even though they have differnt area codes, their phones are answered by the same system and the same voice. No calls are ever returned. This is clearly a fraud. I phoned the Florida Attorney General’s Office to add an out of state complaint to the one shown on the blog, and was asked to use their online complaint form. Hmmm. Also, it seems Brian Curro has a Facebook page showing what bars and “luxury locations and events” he likes. http://www.facebook.com/bcurro This looks like the guy on the website. There is another site showing that Brian Curro is soliciting money to run a marathon. This is unreal. I know how easily things can get out of hand on the net, but I can’t believe that all of these accusations and shady coincidences are the result of a goole dopple. Beware, and bravo to all of you for posting these things.

    Reply
  12. sfchevre

    It appears that the MDA has now launched a “2009 Eyes of California” campaign. In reading all of the comments above, and particularly those relating to Mr. Curro’s unwillingness to respond to the issues raised by Mr. Kamens, it would be most helpful to those who take the time to follow this issue if Mr. Kamens would post the response that he received from the Florida Attorney General.

    Reply
  13. sarasota

    Thank you for repeating my words. . . while it would be great to have such a whistleblower. . none exists within his organization . . .they prefer their salaries . . .physicians who he pays prefer his money. . .and other non profits stay out of the line of fire. An outside source should audit his activities as most of his money is out of state direct mail, given by innocent people who have no idea who they are giving to. I’m sorry I don’t have much more to say on the subject. It looks like it will just die on the vine here. Too bad.

    Reply
  14. jik Post author

    Everything in your original post is true and are well-known facts among those who have worked with Mr. Hoffheimer in the non-profit circles in Florida, DC and beyond.

    So why doesn’t someone do something about it?

    Reply
  15. sarasota

    Everything in your original post is true and are well-known facts among those who have worked with Mr. Hoffheimer in the non-profit circles in Florida, DC and beyond. You are on to something to the tune of about $5 million dollars in fraud and growing. And virtually none of this money is going to research or outreach for either PD or MD. He has total control of the money, thus, he has power in our community that allows him to proceed without question with some physicians, hospitals and allied health professionals. Thank goodness for you! You should write another blog for his PD organization. It’s more of the same. Research and interviews will be the proof in this pudding.

    Reply
  16. jik Post author

    Mr. Hoffheimer posted another comment here, which I have removed, in which he once again did little more than call me names. His one factual statement, which I repeat here for the sake of rebutting it, was that he serves without any compensation, and he cited as proof his organization’s IRS Form 990s.

    I removed Mr. Hoffheimer’s comment because I do not feel compelled to allow anyone to insult me repeatedly on my own blog. Mr. Hoffheimer is free to engage in a dialogue with me here about the legitimacy of his organization if he can confine his comments to facts and leave out the insults.

    I have my doubts as to whether the information he has submitted to the IRS in his organization’s Form 990s is accurate (and by the way, it is standard practice for legitimate charities to make their Form 990s available on-line directly from them, something which Mr. Hoffheimer’s organization has not done). Even if his forms are accurate, there are a myriad of ways to hide inappropriate behavior within the numbers in a Form 990, so this proves nothing.

    As I’ve already said, if Mr. Hoffheimer wishes to prove the legitimacy of his organization, the best way to do that would be to respond to the laundry list of issues and questions above.

    Most notably, he could release a detailed breakdown of exactly how his organization has spent the money it has received in donations. Form 990 gives no real details about how money was spent.

    One more thing, Mr. Hoffheimer. Remember that scene in The Shawshank Redemption where Ellis Boyd Redding claims to be “the only guilty man in Shawshank prison?” The joke is that he is the exception that proves the rule. Guilty people tend to profess their innocence the same way innocent people do, and people who are stealing money tend to forge paperwork to make it look like they aren’t. The fact that you seem to think we should believe you’re innocent merely because you say so is, honestly, laughable.

    Reply
    1. John

      Hoffheimer paid himself and his family $140k last year so if he is saying he doesn’t get paid — wow. Curro got $90k. wonder how much this Marilyn Tait gets? these people act like they are doing us a big favor, big liars, cheating seniors out of their retirement money.

      Reply
  17. jik Post author

    Mr. Hoffheimer, is name-calling really the best you can do to defend your reputation and your organization?

    There’s a huge laundry list above, which I won’t bother to repeat here, of the reasons why it is clear that MDA is a sham. If you wish to prove otherwise, you might start by making an effort to rebut some of them.

    It must really bother you that my blog entry is now the very first result when someone Googles for “Macular Degeneration Assocation”. I’m glad to be doing my part to prevent people from lining your pockets with donations that they thought would actually go to helping people with Macular Degeneration.

    Reply
  18. Larry Hoffheimer

    I am shocked and dismayed that people like the above” MD and PD” patient would disgrace themselves by hiding under the cover of anonymity. I do not believe the above writer has either PARKINSON’S DISEASE or MACULAR DEGENERATION and is part of a small group of malcontents who request for funding was denied. The moderator of this site, Jonathan Kamens, is a professional nitpicker who has little to do with his time other than to find fault with all but himself. Take a look at his personal home page at:http://stuff.mit.edu/~jik/ and you will see what I mean. Nobody has ever made such scurrilous accusations again the Macular Degeneration Association.

    Reply
  19. MD and PD Patient

    My aunt has Macular Degeneration (MD) and Parkinson’s Disease. She was very excited about donating to these “Foundations”, until I did some research and realized that they are a one man show …. Mr. Larry Hoffheimer a retired Washington lawyer (health care lobbying) and an unqualified assistant Mr. Brian Curro who is a personal trainer with no health care experience or medical knowledge….They appear not to have a real board of directors (look them up on the BBB website). They pitch that their mission is to help the patients….of course. They organize big conferences and events for patients with pharmaceutical money and then requests donations…they raise a lot of money and then they probably keep most of the money, since it is unclear what they do with the funds raised. At the very least they are a very questionable “Foundation” and I am surprised that they are still in business… BUT be careful the above two appear to be con mans and are clearly involved in some kind of fraud. If you really want to make a donation for a good cause, give to your local support group or to a reputable PD or MD organization (the above two do not qualify for this rating). Be careful and take care!

    Reply
  20. alexandra

    I have personally known Brian Curro and he is a fraud and a con man. He gets involved in all these charity events and then keeps all the money and everything that has been donated. Please don’t give any monies or anything to Brian Curro

    Reply
  21. mj

    Of course they are not legitimate. Both my husband and I have tried contacting them and never received a response. What kind of charity doesn’t respond to potential donors?

    I have tried writing other charities to see who to donate to. I looked at the other group mentioned on this page, Health Assistance Foundation, and I asked them for how their money is divided between research and administration at 5 PM and got responses by 9:30 the next morning. My husbanc got health information in FIVE minutes from them. I dont know if they are the best group in the world because they have 29% going to administration and fundraising. Their response says they have BBB accredidation. I dont get how they have an AIP c- rating but have BBB approval. But if I had been diagnosed with macular last night I would not want to wait any longer than this morning to get information. That says a lot more to me.

    it says a lot to me too that that macular degeneration association was so unprofessional on this blog.

    thsnkd to you for bringing this group to our ttention

    Reply
    1. Barb

      Foundation Fighting Blindness, 7168 Columbia Gateway Drive, Suite 100, Columbia, Maryland 21046 is the best organization to fight blindness. Their grants to researchers is awesome, having restored sight in dogs and now humans.

      Look them up on the internet.

      Reply
      1. jik Post author

        Foundation Fighting Blindness gets a B grade from AIP, which isn’t bad. There are vision-related charities with higher grades, though, including:

        Glaucoma Foundation
        Guide Dog Foundation for the Blind
        Helen Keller International / ChildSight
        Lighthouse International
        National Federation of the Blind
        ORBIS International / Project ORBIS International
        Prevent Blindness America / National Society to Prevent Blindness

        Reply
  22. Joanne Powers

    Thanks for all of this info. My mother has been giving to this organization for some time now (I mean a period of years) through both paper checks and electronic direct bank payments. I recently found myself trying to close out her electronic gifts and came across this website, since there was no website on the last mailing I could find from them. Today in the mail I had another request for money from MDA: No statement of a mission no explanation of anything. Just two pages telling how to send them money and how much. She has given in the past to many charitable organizations and the pitch to this is not charitable. She couldn’t see that because she cannot read as she actually has extremely advanced macular degeneration. I only wish I had checked this all out earlier for her. Today we celebrated her 96th birthday and although she couldn’t really see any of us, she had a great time.
    Giving to the eradication of Macular Degeneration is a very wonderful thing to do. Just check out where it goes as with any charitable organization.
    [Also, I wanted to add that when you go to the website now given for this organization, several of the choices on the sidebar have nothing included, as though it is still being built and the earliest content is, I believe, November 2008].

    Reply
  23. jik Post author

    Barbara,

    Thanks for your comment.

    Mr. Curro’s comments here are an implicit acknowledgment of the fact that people who take the time to research MDA on the Web before sending a donation are going to see my blog. In fact, this blog entry is currently the sixth search result on Google if you search for “Macular Degeneration Association” without the quotes, and the fifth search result if you include them.

    I do hope that others, like you, take the time to research before sending any money to MDA.

    Incidentally, it is worth noting that the Macular Degeneration Research project of the American Health Assistance Foundation, mentioned above, has had it’s AIP grade raised from D to C-. That’s still not great, but it’s the right direction to be moving in. It wouldn’t be so outrageous to send them a donation if you want to support M.D. research; certainly, they are a more worthy organization to support than MDA. And at least MDR has allowed itself to be reviewed by both AIP and the BBB; many other M.D. charities have not.

    Reply
  24. Barbara Green

    My mother had MD and it was devestating to her, having been active all her life. Having to give up driving, as well as reading, etc. it caused much despression for her.

    I received “the letter” from Mr. Brian Curro this past week, and as I planned to make a donation in memory of my mother, I decided to check out the website where I found all the above information.

    Thanks SO much for educating me and hopefully many others.

    Respectfully,
    Barbara Green

    Reply
  25. jik Post author

    For those of you are [sic] search engine handicapped if you actually did a search of MDA you would find their website at www.maculardegernationassociation.org [sic]

    That Web site did not exist when I received the solicitation from MDA and wrote my letter and blog entry about it.

    Of course, Mr. Curro is fully aware of that, since he created the Web site. And yet, rather than concede that the Web site did not exist when I wrote my letter, Mr. Curro chooses to falsely imply that the only reason why I was unable to find it was because I was “search engine handicapped.” This, by itself, should tell you everything you need to know about whether you should trust anything else Mr. Curro has to say.

    Lest you think I am the only one who believes that this charity is not legitimate, check out http://www.mdsupport.org/portal.html#MDA.

    Oh, and by the way, would the executive director of a legitimate organization whose purpose is to help those who suffer from a chronic disability use the term “handicapped” as an insult?

    MDA is a legitimate organization

    Really? Who is on is your board of directors? Why isn’t there anything on your Web site about how you spend the money you raise? Why has the man identified as the president of the organization in the letter I received last April, Michael Alicea, disappeared without a trace and been replaced by Mr. Curro? What qualifications does Mr. Curro, who is a personal fitness trainer by profession, have to run a legitimate charitable organization? Why hasn’t your organization been rated by the AIP? Why don’t you have a real office? Why don’t you tell people on your Web site how they can visit you in person? Why is it that when I click on the “Newsletter” link on your Web site, and then click on “Macular Degeneration Newsletter September 08″ (the only one listed), what I see, rather than a newsletter about macular degeneration, is a supposed newsletter for the Parkinson Research Foundation? Why does the Parkinson Research Foundation have the same mailing address as MDA? Why is it that neither MDA nor PRF, both of which were “founded” by Lawrence Hoffheimer, has been rated by the American Institute of Philanthropy? Why won’t MDA provide information about itself to the Better Business Bureau? Why isn’t there any evidence on the entire World Wide Web of MDA ever making a grant of any sort to any organization? Why is the “Ask the Doctor a question” page on the MDA Web site identical to the same page on the PRF Web site, and why have no questions been posted on either site? Why isn’t your “medical director” mentioned on that page identified by name? Why is the “About us” page for MDA virtually identical to the “About us” page for PRF? Why are the subscription rates for PD Update on your Web site ten dollars higher than the rates quoted by on the newsletter’s own Web site? Why are most of the links on that Web site broken?

    I’m sure if I kept digging I could come up with a lot more questions, but I think I’ve made my point.

    I must acknowledge that PRF has at least a semblance of legitimacy, since it appears that it might have actually given some real money to real people. However, given all the other issues raised above, as well as the fact that the organization refuses to tell anyone how the amount of money it has given out stacks up against the amount of money it has raised in donations, I think it is exceedingly likely that the money it has given out is in fact a small percentage of what it has raised, and the express purpose of those grants is to create that air of legitimacy while allowing Hoffheimer and his cronies to pocket most of the donations as “salary” and “consulting fees.”

    Hoffheimer could, of course, prove me wrong by releasing audited financial statements for the past several years for MDA and PRF, as most reputable national charities do. I think it is unlikely that this will come to pass.

    and the founder Lawrence Hoffheimer although not a medical professional has been involved with charitable foundations for over 20 years.

    … and I’m sure every one of them is at least as reputable as MDA and PRF.

    Reply
  26. Brian Curro

    I would like to clear up some confusion regarding MDA. For those of you are search engine handicapped if you actually did a search of MDA you would find their website at www.maculardegernationassociation.org MDA is a legitimate organization and the founder Lawrence Hoffheimer although not a medical professional has been involved with charitable foundations for over 20 years. As both an attorney in DC and as the chairman of several successful and productive foundations. I would recommend that you do more research before you slander a foundations reputation.

    Reply
  27. Kelly Herberger

    We at the American Health Assistance Foundation (AHAF) would like to clear up some confusion regarding our organization. Macular Degeneration Research (MDR) is one of three programs that fall under AHAF, a non-profit organization dedicated to research and public education. We are NOT associated with the Macular Degeneration Association (MDA), the subject of the original blog entry on this page, and we regret any confusion caused by MDA’s decision to use a similar name.

    To date, our program, MDR, has committed over $7.7 million dollars to peer-reviewed biomedical research. AHAF, as a whole, has committed over $80 million to peer-reviewed biomedical research aimed at developing treatments and cures for three devastating age-related neurodegenerative disorders: macular degeneration, Alzheimer’s disease, and glaucoma. AHAF has given grants to high caliber scientists at some of the world’s top research institutions. A list of current awards is available on our website http://www.ahaf.org.

    AHAF has earned the Better Business Bureau (BBB) Wise Giving Alliance seal of approval. In three years, we have nearly tripled the amount we give to research and programs (mainly public education). A full report on our organization is available to the public from the BBB at http://www.give.org. This website also describes the guidelines used by BBB to evaluate our charity.

    Although the AIP scoring for AHAF is regrettable, AHAF applauds AIP and other watchdog organizations for their efforts to report on non-profit efficiency. Our understanding is that the AIP scoring is related to cost of fundraising, an issue that AHAF is currently addressing. AHAF returns approximately 71% of its revenue to programs, and supports over $9 million of research annually. In addition, donors may commit 100% of their contribution to AHAF research or other programs by simply requesting that this be done.

    AHAF’s independently audited financial statements are publicly available on our website, as is our Annual Report, which summarizes our income and expenditures. Our Annual Report, IRS-990 forms and complete financial statements can all be downloaded from our website, or requested by phone (1-800-437-2423) or mail.

    Brian K. Regan, Ph.D., referenced in a prior commentary, is an unpaid volunteer of the organization and serves as the current President of our Board of Directors. Professionally, Dr. Regan is the Vice President of Administration at New York Presbyterian Hospital, one of New York City’s most prominent health institutions.

    AHAF is a growing charity with a unique mission and challenge. We sincerely appreciate the vital work of watchdog organizations and private citizens who investigate charities. We also value the atmosphere of open exchange that allows us to post our response on this forum. We encourage any interested person visit our website (www.ahaf.org), call our toll-free number (1-800-437-2423) to speak to a staff member or write to us for more information on any aspect of our organization.

    Sincerely,
    Kelly Herberger
    Communications Associate

    Reply
  28. jik Post author

    MDR is a legitimate charity, but the American Institute of Philanthropy gives them a grade of D (on an ABCDF scale), so I don’t really recommend giving money to them.

    Reply
  29. addlib

    Got a similar pitch from Machular Degeneration Research 22512 Gatewaty Center Drive POBox 1952 Clarksburg MD 20871-1952 Appreal directed to Greater South Plainfield Area Drive 2008 Annual Fund
    with a deadline of sept.22 2008 by Brian K. Regan PHD president
    Are they on the level or an offshoot of other group?

    Reply
  30. Diana

    I received a solicitation in the mail. It reads as follows: “Macular Degeneration Association / 2008 Eyes of [State Name] Campaign / Macular Degeneration Association is a mission of the American Medical Research Organization / 420 Beach Road / P.O. Box 20256 / Sarasota, FL 34276 / Phone: 941-870-4399 / Dear Ms. _______, If you have so far managed to keep your precious eyesight safe from the devastation of macular degeneration, you are definitely one of the lucky ones! If you don’t know someone who has been victimized by macular degeneration, you may be unique! After all, estimates are that more than 17 million Americans have symptoms of this sight-destroying disease and 2 million suffer from functional blindness! All this from a disease that seems to have come from nowhere to become the #1 cause of legal blindness in older Americans today! One out of every four Americans over age 65 already shows signs of this vision-killer. But the worst news of all is that there are as many as 500,000 new cases diagnosed each and every year. That means macular degeneration strikes someone almost every minute of every day, Ms. ________! That is a terrifying fact! And it is made even more terrifying by the painful knowledge that we have no way of knowing who that victim will be. It could be you or me. A family member. One of your neighbors or friends there in [Town Name]. Ms. _________, I’ve seen what macular degeneration does, how it steals your most precious sense and leaves you legally blind, no longer able to enjoy so many of the simple pleasures that mean so much to you. Seeing what this awful disease does is a big reason why I founded the Macular Degeneration Association. To help stop this disease before it does that to you or someone dear to you is a big reason why we are conducting our 2008 Eyes of [State Name] Campaign. Victims of macular degeneration lose their straight ahead vision. If you want to know what the impact on their vision is, hold a tennis ball or your fist right in front of your eyes. That’s what their world looks like. It’s not a killer, but it is most definitely a lifestyle killer! And at a time when Americans are living longer than ever, the thought of doing so is not pleasant if those extra years have to be spent in a state of legal blindness! Never has the need been greater, never has the pressure been greater to find the solutions to an epidemic disease. And thankfully, we have learned much from research in recent years. But we have reached a point where what we do… or what we fail to do… in the next few months, may well determine whether we succeed… or fail… in our efforts to eliminate this eyesight-destroying disease! That’s why I desperately need your help. There is a great deal of promising research that could be under way right now if we only had the money to fund it. I’m asking your to join our fight against America’s most feared vision disease. A gift from you today in the amount of $15, $25, $50 or any other amount you can possibly afford to send, could… …when added to similar gifts from other caring Americans like you, be the one that lets one more research project move forward! Please help. Please be as generous as possible. But most of all, with this disease striking a new victim almost every minute of every day, please send your gift today if you possibly can! Before it’s too late. Before your luck runs out. Thank you, Michael A. Alicea, President / MMA/eoa / P.S. Be sure and make regular eye examinations a regular part of your efforts to maintain a healthy lifestyle.”

    I for one cannot support the use of fear as a fund raising tactic, legitimate organization or not.

    Reply

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