KACF Update

An Update on the Kristen Ann Carr Fund

David Marsh

[Editor's Note: Dave Marsh, a journalist, author, and broadcaster, is a trustee of the Kristen Ann Carr Fund and a board member of SARC.]

The Kristen Ann Carr Fund came into existence before Kristen Carr died from retroperitoneal liposarcoma on January 3, 1993. In fact, among our family and friends, creating an organization that would help cure sarcoma was Kristen’s idea. Twelve years after her death, we have raised several million dollars and created a fellowship and a laboratory at Memorial Sloan-Kettering Cancer Center in New York City.

Kristen received her sarcoma diagnosis in 1989. The bad news arrived six weeks after her first surgery, which forcefully makes the point about what a difficult time pathologists often have identifying sarcoma. She chose as her doctor Murray Brennan at MSKCC. Very soon after meeting Dr. Brennan, Kristen began talking about raising funds to study and cure sarcoma.

In the music industry, where her mother works and about which I’ve written for decades, charity fundraising is a constant process. In fact, Barbara worked with Tony Martell of the T. J. Martell Fund when he established that organization, which has played a significant role in advancing knowledge and treatment options for patients with leukemia and AIDS. Additionally, we live in Manhattan, where charity fundraisers are a major social activity.

So it seemed natural for Kristen, her sister Sasha, boyfriend Michael Solomon, roommate Ilyse Gordon and a couple of other friends to plan a benefit—a dance, not a dinner, that was clear, since Kristen liked dance parties and dreaded formal dinners. The plan was to address both sarcoma and teenagers and young adults with cancers of all kinds, since Kristen found falling between the cracks of adult and pediatric care somewhere between mildly amusing and totally frustrating. We still provide some services for young people with cancer, and support other organizations such as Planet Cancer that specialize in that endeavor.)

Kristen’s relationship to Murray Brennan became very personal. No matter how sick she got, she wanted to know more about Dr. Brennan’s work, which could mean anything from how his day had gone to the latest information on sarcoma treatment. One day, she asked him, “What’s the single most important thing you need?” “A fellowship to train young doctors how to deal with sarcoma,” he responded immediately. “But” he quickly cautioned, “that takes a million dollars.”

Kristen didn’t hesitate. She looked across the room, and said “Mom….” Barbara took all this in and said, “We’ll get it done.”

As it turned out, Kristen’s disease metastasized to her lungs in October, 1992 and her situation almost immediately became grave. Within nine weeks, she’d died. And within a month of her death, thanks to the generosity of our friends in the music world and elsewhere, we’d raised $100,000 toward the fellowship. Then that spring, Bruce Springsteen, with whom Barbara worked, announced that he’d play a Madison Square Garden benefit to fund the Kristen Ann Carr Fund. Dr. Brennan’s head swam a little bit, I think, when he realized that this one event would fund the fellowship, with enough left over to let us do a few other things, such as a sarcoma newsletter in print format (available in Adobe PDF format at the Kristen Ann Carr Fund website too.

Kristen got her wish for a winter dance event too, though it has now evolved into a (completely informal) dinner party each spring. That event, entirely organized and managed by her peers and very profitable from the beginning, allowed us to fully endow the Kristen Ann Carr Fellowship at MSKCC. To date, we have trained 11 extremely talented surgeons: Dr. Jonathan Lewis, now doing pharmaceutical research applicable to sarcoma, and Dr. Martin Heslin, now practicing at University of Alabama-Birmingham Hospital, were the first two. A complete list of fellows is on the Kristen Ann Carr Fund website.

There are former Kristen Ann Carr fellows still working at MSKCC, about which we’re very proud, but the real benefit to sarcoma patients comes from the spread of surgical expertise throughout the United States. Because of the fellowship, there is greater sarcoma expertise from Boston to Denver, Seattle to Jacksonville. As trustees of the fund, Barbara, Sasha and I make it our business to meet at least once with each fellow, and so we know for certain that Dr. Brennan has lived up to the other part of what Kristen wanted, which is to seek doctors who share his extremely humanistic approach to patient care.

Two years ago, Dr. Brennan and Dr. Samuel Singer, newly arrived at MSKCC from a joint appointment at Mass General and M.I.T. in Boston, came to us with a proposal to create a Sarcoma Laboratory, which would focus on Dr. Singer’s work with nuclear magnetic resonance (NMR). We quickly agreed to raise the $1.4 million for it over the next five years. We’ve reached approximately the mid-point of this financing.

Dr. Singer’s report to the Fund this year ran to about a dozen densely packed pages. It explains in great detail his work with both NMR and microarrays to identify the specific subtypes of, as it happens, retroperitoneal liposarcoma, on the way to creating equally specific treatment plans for each future sarcoma patient. While such research can finally be evaluated when it’s applied to patients, the Sarcoma Lab is unquestionably working in a crucial new area of medical research and the promise for great results is there. We have high hopes that when Dr. Brennan steps down as chairman of MSKCC’s department of surgery that he will have more time to spend with Dr. Singer in the Lab. Both Dr. Brennan and Dr. Singer continue their clinical practice, too.

Of course, the midpoint in any project marks the time when new plans begin to develop. While what the Kristen Ann Carr Fund does next is anybody’s guess, our endowment and our donors’ annual generosity are sufficient to give us a base for tackling future projects of real significance.

One of the most important factors in our decision will be the presence of groups like the Liddy Shriver Sarcoma Initiative, Sarcoma Foundation of America, and the Sarcoma Alliance for Research for Collaboration (SARC). We look forward to working together with these groups to accomplish the enormous task before us: Ensuring that people like Kristen Carr and Liddy Shriver get to live the fullness of their lives with the people who love them. Today, as Dr. Brennan pointed out in a recent ESUN article, the great majority of sarcoma patients survive. We aim to help finish the job.