The PBS News Hour uses the Frohnmayer family tragedy with Fanconi’s Anemia and the UO/FSU Rose Bowl game as a hook to examine the larger issue of research on rare diseases, here:
HARI SREENIVASAN: Dr. Summar, that attention, focus, there are 7,000-plus rare genetic disorders out there. And I’m going to feel a little callous saying this, but it’s almost the best thing that can happen is a celebrity gets it.
DR. MARSHALL SUMMAR, Children’s National Medical Center: In many ways, there’s some truth to that. …
HARI SREENIVASAN: Dr. Summar, what about these other 7,000 diseases? How do they gain kind of attention, especially from the pharmaceutical companies, right?
I mean, I hate to be a capitalist about it, too, but where’s the market? If it’s only 1,000 people or 500 people, do drug companies say, OK, we will take that risk and we will put in all that money into research and development and try to find a cure, vs. going after diabetes or cancer, right?
DR. MARSHALL SUMMAR: Well, that’s actually a great question, because, historically, they didn’t. They stayed away from the rare disease field. They figured there weren’t that many patients. There wasn’t much market. …
4/26/2010: What do gifts buy?
Greg Bolt of the RG will tell you that Pat Kilkenny has been working for UO without a written contract, just like Bellotti did. Not a surprise at this point. But why did Dave Frohnmayer ever put Kilkenny in charge of the UO athletics department, and let him decide how many millions of dollars – most of it public money, or tax deductible gifts – would be spent how, and on which coach?
These things are very complicated and involve lots of mutual respect and consideration of the public interest are usually about money.
Frohnmayer received $200,000 per year in pay from donors to the UO Foundation, and a special $150,000 bonus in 2009. These payments to Frohnmayer amounted to about 3% of the entire payout from the UO endowment that year. Who gave this money? What were the terms of the gifts? The Oregon Attorney General has ruled that the UO Foundation can keep this a secret.
But the IRS has released the data on donations from Pat Kilkenny’s “Lucky Duck Foundation” to Dave Frohnmayer’s Fanconi Foundation. Courtesy of the IRS and www.guidestar.org. Kilkenny gave $240,000 the year before Frohnmayer appointed him as Athletic Director, and another $100,000 each year since.
This is a sad story for everyone involved, in just about every possible sense. And no one would argue that Frohnmayer benefited financially from these donations to the Fanconi Foundation. But they create an obvious potential for a conflict of interest. Frohnmayer should have immediately made them public, and recused himself from any decisions involving Pat Kilkenny. Instead he kept quiet and then appointed him UO Athletic Director and gave him control of a budget of about $60 millon, mostly public funds. Not good, Mr. Frohnmayer.
Not available until 11/15/2010 – assuming they run out the IRS reporting extensions again.