Innovation Bootcamp: What's the deal with the Jeffrey Modell Foundation?

Advertisements about Primary Immunodeficiency by the Jeffrey Modell Foundation are all over the airports these days. While traveling over the past couple months, I've seen at least a dozen different ads: here are a few samples.

I've never heard of this foundation before, and with these ads suddenly so ubiquitous, I've been curious about what is going on. The Foundation's website indicates that it was founded by Jeffrey Modell's parents, Fred and Vicki Modell:

From the hardship of their own experience, Jeffrey's family learned the enormous medical, emotional, and financial difficulties associated with Primary Immunodeficiency (PI). They found that families with this problem had nowhere to turn for help.

Since Jeffrey's death from pneumonia in 1986, the Modells have been committed to supporting those afflicted with PI. They established the Jeffrey Modell Foundation to help patients, their families, physicians and researchers understand the nature of PI.

While the Modells may be committed to supporting those afflicted with PI, it seems they are also committed to supporting a fairly comfortable lifestyle for themselves.

The Form 990 below gives the latest available financials on the foundation. In 2009, it had total contributions of $8.4 million.

Out of this, Frederick Modell, the President of the Foundation, had reportable W-2 comp of $352,962, and other estimated comp of $291,654.

Vicki Modell, the Vice President and Secretary, had reportable W-2 comp of $255,769, and other estimated comp of $276,276.

So out of contributions of just over $8 million, the two founders took home comp of about $1.1 million.

The Form 990 doesn't give the details on where the Foundation gets its donations, beyond the breakdown that $3 million came from government grants and $5.4 million came from all other contributions.

Why would the government need to funnel money through a Foundation that uses such a high percentage of funding for the personal comp of its two officers?

Who is providing the other $5.4 million in funding? I'm curious if a pharma company with a treatment for PI is providing that funding so the foundation can raise awareness of the condition. When a pharma company advertises a condition that we didn't previously recognize existed, it seems obviously self-serving. While if a foundation raises awareness, it seems public spirited. Not sure if this is what is going on here, but it does seem to me highly unusual to start a foundation devoted to the disease that killed your son, and then to take home comp of over $1 million a year from that foundation.