This letter is our annual message to those who have, for the past 25 years, been our collaborators in creating The Kristen Ann Carr Fund. The letter serves as a report on what we’re planning, a compilation of memories of what’s already been done in Kristen’s name, and a description and assessment of the most important things we are doing to play our part in the fight against sarcoma. If you don’t know what sarcoma is, that’s no surprise: These rare, treacherous and often deadly cancers, that can appear anywhere in the body and are in part defined as having no symptoms, constitute only about 1% percent of cancer cases but far more than half of the types of cancer.
What remains to be done to improve sarcoma care is a not a short list, but it is indisputably significantly shorter than it was in 1992 when Kristen, her family and friends began bedside discussions about how to solve the many riddles of sarcoma.
Our guide toward what needs to be done, then and now, has been Dr. Murray Brennan, at that time chief of surgery at Memorial Sloan Kettering Cancer Center in New York. For the last three years of her life, Kristen was one of Dr. Brennan’s patients. They developed a remarkable friendship, and Dr. Brennan remains in many ways our most important guide. It was Dr. Brennan who Kristen asked “What do you need,” and who gave her the crucial reply, “I need doctors”. Since then, the KACF, through its funding of permanently endowed fellowships, has helped train dozens of doctors who understand how to identify a sarcoma, what to do about it, and just as important, what to avoid doing. Even before any of the clinical research that has been done in her name, this creation of a line of sarcoma experts, who in turn teach others, creates better odds for longer survival in each generation. This creation of permanent commitments was the first breakthrough.
Along with Dr. Brennan, we have been guided by a series of other superb doctors, including Dr. Sam Singer, Dr. Paul Meyers, Dr. William Tap, Dr. Robert Maki, Dr. Richard O’Reilly, Dr. Kristina Atonescu, Dr Andrew Kung, Dr. Jose Beselga, and dozens of other doctors, nurses, technicians, researchers, patients, patient families, and, all of them, friends.
Currently, there are 25 former Kristen Ann Carr surgical fellows, 7 medical oncology fellows, and 3 clinical oncologists. Once it was difficult even in medical circles to find doctors who knew much about sarcomas, but now, in terms of both hospital care and research discoveries, sarcomas are undeniably prominent subjects. KACF didn’t do that alone, but we led the way. The presence of skilled sarcoma experts alone saves lives, especially by reducing misdiagnosis. We have of course also invested heavily in the most advanced research equipment, in building a laboratory and in grants to young doctors and scientists.
Our most ambitious endeavor is the creation of a Virtual Sarcoma Center on the Sloan Kettering campus, which centralizes, expands and condenses patient facilities, and helps similarly in coordinating medical staff. Beyond even that, it means enlarging staff in several crucial areas. By its nature, this is a long-term commitment not only on our part but also by Sloan Kettering.
Believe it or not, we’ve left out a good deal, most conspicuously Nina Picket and the indescribably dedicated staff she has assembled in the pediatric area. Sarcoma pediatric wards may contain newborn patients all the way through patients in their twenties. Memorial’s beautiful (and mostly off limits, unless you qualify) teenage and young adult facility is one of the wonders of the young adult world, appropriately since it was spearheaded by our old friend Roger Daltrey of the Who.
Kristen’s vision included all this; she drove with all the energy she had to realize it and, in that respect, we can say truly that the story of The Kristen Ann Carr Fund originated in her life. This is the spirit that drives what we do, especially our main event, A Night to Remember, which is held each spring at the Tribeca Grill in New York City.
We have had some remarkable well-known guests, and we have had some great musicians on our stage (since Steven Van Zandt put his foot down and said we had to have a stage). Last year we had Steven, Bruce Springsteen (Kristen’s boss on his 1992 concert tour), Jackson Brown and Eddie Vedder. They all came to support her and us. but they also came because we had a hot band, Danny Clinch’s Tangier Blues Band, for which Danny is both leader and vocalist. They were just flat out fine, as blues is meant to be.
And on April 13, 2019, our great friend Danny Clinch, photographer extraordinaire, musician, patriot of Asbury Park and the Jersey Shore, and a guy with a heart as big as a hurricane, will be our honoree. It’s always a beautiful, elegant in all the right ways and casual in the rest, evening, and one to truly look forward to.
Friends like those we have named here, as well as lesser known but remarkably generous souls too numerous to name, have spurred this monumental effort that has helped so many. We cannot name every donor, participant, and volunteer. The virtual Sarcoma Center is named for Kristen but if you’ve helped us over the past quarter century, you’re one of our leaders, too. The center may be virtual but the price of creating it was $10,000,000. We’re precisely at the mid-point, right on schedule but it isn’t our triumph’s or even just Kristen’s. It’s the tribute of all that combined energy, and it boils down to one thing: Love.
So we must end by thanking each of you who read this and help out in one of the myriad ways the KACF and the patients and the doctors need help. Thank you for bringing Kristen a little closer; thank you for supporting the 13,000 people who are diagnosed with one of the 100 or more types and sub types of sarcoma each year. Thank you for believing in a young woman’s passion and inspiration. Thank you for helping out however you do. Thank you for remembering.