The 1992 holiday season found us at our lowest point . Kristen’s illness had grown much worse. We had yet to understand that we were trying to stop a locomotive with our bare hands. By the first week of January 1993, about all we knew was an urgent need to keep others—patients, their families, and communities—from experiencing the devastating loss that we just had.
Our target was and is sarcoma, a group of cancers which has somewhere between 50 and 100 types, yet represents just 1 percent of all cases. Also, any sarcoma can show up in any area of the body. Worldwide, only a tiny group of experts has the special training to treat these tumors.
“What do you need?” Kristen asked Sir Murray Brennan, her surgeon and one of the world’s leading sarcoma experts. “I need doctors,” Dr. Brennan replied. Kristen just turned and said “Mom…” We have now spent a quarter century following through on that moment.
Kristen’s sister Sasha, her best friend, Ilyse Gordon Lesser, and her fiancé Michael Solomon, led a core group dedicated friends—as each of them still is—to fighting Kristen’s nemesis. Her mother worked, as she still does, to find help from friends in the music community. More than $100,000 was raised in the first weeks after Kristen passed. But a fellowship at Memorial Sloan-Kettering Cancer Center cost $1.5 million. In May 1993, family friend Bruce Springsteen performed a benefit concert at Madison Square Garden. This show, even more unforgettable than Springsteen’s usual, sold out in a couple of days and his generosity gave us enough for the fellowship.
Now, all of us turned to Dr. Brennan, as we have continued to do for the past 25 years, and said, “What else do you need?” Among the answers:
- a second fellowship, this one in pediatric medical oncology,
- a dedicated sarcoma laboratory,
- nuclear magnetic resonance equipment for both research and diagnosis,
- support for the sarcoma pathology lab,
- financing for a young surgeon who treats and studies Kristen’s very tumor (retroperitoneal liposarcoma).
All of this leads to far better treatments and a lot of knowing what not to do (always one of the greatest challenges). Most important, patients all over the world—from the Pacific Northwest to Pakistan, Ottawa to San Diego—now have the benefit of receiving care from one of the 39 surgeons and oncologists that Kristen’s fellowships supported… and the doctors they’ve trained, and the doctors they train. It doesn’t stop there for two reasons, the first being that the 2 fellowships are a perpetual endowment and the second being that it can’t, because current patients need help every single day.
On top of that a Murray Brennan Award offers two years of funding for the best sarcoma study proposal from a former KACF Fellow. In Providence and Toronto, this has led to impressive sarcoma symposia, with appeal to scientists, physicians, caregivers and patients.
A few years ago, we got a one-of-a-kind funding request. A young woman with sarcoma – whose name is Kris Carr –needed funds to finish a documentary about her treatment and what she learned from it. We are very proud to have said “yes.”
Two films about us, and about the programs we fund, are at our website, KristenAnnCarrFund.org. If you know (or are) someone who needs sarcoma treatment, also posted there is a list of former Kristen Ann Carr Fellows and the hospitals around the country where they practice.
We have now taken on the creation of a virtual sarcoma center at MSKCC. This is the largest project we have attempted ($10 million) and among the most important. When Kristen was treated, the sarcoma faculty was uncoordinated — especially across departments (surgery, medical oncology, radiation therapy, psychosocial, and more). It wasn’t an easy situation for anyone, especially the patients. The Kristen Ann Carr Sarcoma Center will bring the MSKCC faculty and staff closer together and ensure that sarcoma has a larger and better staff, among other things. We are especially grateful to Dr. Jose Beselga, MSKCC physician-in-chief, and Dr. William Tapp, section chief of sarcoma. (There’s an excellent video on Dr. Tapp’s page of the Sloan-Kettering website that explains a lot about the necessity for organizing the staff more tightly.)
It’s not all somber reality. Our most important fundraising takes place each spring, at Tribeca Grill and through its companion silent and online auction. The party is just what Kristen, Sasha, Ilyse, Michael and the rest envisioned: elegant with a dose of rock’n’roll. It’s called A Night to Remember.
We and our volunteers strive to make another night to remember out of the KACF annual Holiday Party for MSKCC’s pediatric out patients at the Hard Rock Cafe in Times Square. A week later, at the hospital, a guy who sounds like Dave and looks like Santa has the honor of meeting all the in-patient kids and young adults.
And then there’s you, the people who have supported Kristen Ann Carr’s vision for more than two decades. Whether you are a donor, a volunteer, a patient, a loved one, or a medical professional, you have our deepest thanks and gratitude. Of course, the fundraising aspect of this letter is crucial. But there has been, since the beginning, a sense of personal warmth from so many people — from old friends to new acquaintances and all in between — that has aided us beyond any measure. Thank you for your generosity, your strength, and your endurance, above all. Kristen would be proud of you.