CF Patients’ Most Valuable Player: The Boomer Esiason Foundation was born when the famous quarterback’s son was diagnosed with cystic fibrosis at age 2.

Boomer and Gunnar Esiason.

Ten years ago, when Boomer Esiason of Cincinnati Bengal fame found out that his 2-year-old son Gunnar had cystic fibrosis, Esiason and two longtime friends, Lee Becker and Dave Rimington, started the Boomer Esiason Foundation (BEF). Knowing nothing about the inner workings of foundations, the three “winged it” and now run the second largest foundation for cystic fibrosis in the United States.

The endeavor has not been challenge free. Not only did the decade-old foundation lose its donated office space and numerous supporters when the first plane crashed into one of the World Trade Center’s twin towers on September 11, 2001, but the foundation has also weathered one of the most protracted downturns in the United States economy since the Great Depression.

Esiason’s goal is to help speed the drug approval process so that therapeutic drugs become available to cystic fibrosis patients on a timely basis. Underlying that goal is the hope that a cure for cystic fibrosis will be found in time for Gunnar and others, and that cystic fibrosis patients remain healthy enough in the interim through the use of new and better treatments.

Esiason and his wife Cheryl are honorary cochairs of the Cystic Fibrosis Foundation (CFF) “Building Bridges to a Cure,” the fund-raising arm of the Therapeutics Development Program (TDP). The TDP is where most of the funds raised by the Esiason Foundation are funneled. It dovetails with the foundation’s mission to provide financial support to research aimed at finding a cure for cystic fibrosis.

“Our way to measure success is by the size of the check we write to the Therapeutic Development Program,” says Becker, head of business development. The foundation has also helped heighten awareness about the disease. “There is no way CF would have gotten this much money 15 years ago,” he says. The foundation raised nearly $6 million in fiscal year 2003.

Roughly 30,000 people in the United States have cystic fibrosis, a small population providing little incentive to drug companies to spend the $300 million and 14 years needed to bring a cystic fibrosis drug to market. That is why the TDP provides resources to drug companies and works to create an infrastructure to expedite drug development and the approval process.

While companies are offered incentives through the Orphan Drug Tax Credit, they still must secure the needed resources. Investors are often wary of making large financial stakes in orphan-classified drugs. To aid the process, the CFF created the TDP and the Therapeutics Development Network, which comprises 14 cystic fibrosis care centers designed to expedite Phase I and Phase II of clinical drug trials. The network streamlines the process and ensures that uniform data are collected.

Grant Program
In its first year, the BEF raised $60,000, according to Giacomo Picco, head of the foundation’s transplant and scholarship grant programs. The foundation raised $5.68 million in fiscal year 2003 and hopes to raise $7 million in fiscal year 2004.

Fund-raising by the BEF is specific to each of its programs. Donors who give to the Lung Transplant Grant Program can be assured that 100% of their donation is used to help the families of CF patients receiving transplants. Administrative expenses, roughly 10% of total revenue, come out of the money raised to fund the TDP.

The Esiason Foundation has given about 30 families an average of $3,000 each to help pay transportation, housing, food, and other miscellaneous expenses when a family member with cystic fibrosis is receiving a transplant. Most transplants are lung transplants, but occasionally a cystic fibrosis patient needs a liver transplant. At any one time, as many as one third of the 30,000 people afflicted with cystic fibrosis are in need of a transplant.

Applying for either a transplant or scholarship grant through the Esiason Foundation is quick and easy. “Once someone has applied for a grant, we let them know within 2 weeks whether they are approved and for how much,” Picco says. “Part of the reason we are so effective is that we have a very fluid organizational chart. Everyone helps everyone else.”

Although there are no official demographic limitations, Picco notes that the foundation tends to award grants based on financial need and age. “A family with three CF kids living on minimum wage income, for example, would jump to the top of the list,” he says.

One recent recipient of a lung transplant grant was a 12-year-old girl from St Louis, one of three siblings with cystic fibrosis whose parents were teachers. Another recent recipient was a 47-year-old man from New York with a 3-year-old daughter. He wrote to the foundation after his transplant saying that he can now put on his own socks for the first time in 2 years.

A recipient of Cantor Fitzgerald’s goodwill, the BEF shared the 101st floor of the World Trade Center tower where the first plane hit on September 11, 2001. Luckily no one from the foundation was in the office that day, says Becker, “but we lost a board member and a lot of supporters.” On that fateful day, Cantor Fitzgerald lost 658 employees, many of whom were supporters of the Esiason Foundation: they attended fund raisers and wrote checks when they received their year-end bonuses.

“Both 9-11 and the year after are a total blur,” Becker notes. “Yet because people knew our situation, they really opened up their pocketbooks. And the quarterback mentality led by Boomer—to just keep moving—helped.”

Since September 11, 2001, Becker notes that revenues have nearly doubled as have the number of employees, currently eight. “It was a mom-and-pop shop for the first 4 to 5 years,” he says. “But we were able to raise a lot of money because of Boomer’s name.”

September 11 was not the foundation’s biggest challenge. “The recession has been a daily fight,” says Becker. Following 2002, in which business revenues were down, companies cut 2003 budgets. By 2003’s third and fourth quarter, the money was gone, but 2004 looks better, he says.

A vast majority of the funds raised by the BEF come from corporate sponsors. Because of Esiason’s celebrity status—four-time Pro Bowl selection and the NFL’s 1988 Most Valuable Player—the foundation’s corporate sponsors are also generous with nonmonetary gifts. Office space, once donated by Cantor Fitzgerald, is now provided by London-based HSBC Holdings.

For the 2003 Booming Celebration, a black-tie dinner, the foundation raised $2.2 million, of which $1.6 million, or 73%, was net income. By comparison, Picco says that many foundations have expenses that typically reach 50% of the gross revenue raised for such an event.

While a cure for cystic fibrosis may still be years away, the foundation’s work has touched countless families, including Esiason’s own, and it will continue to try to speed drug development so those afflicted with the disease can live longer, healthier lives.

Fran Howard is a contributing writer for RT.