This year, the trustees of the Kristen Ann Carr Fund re-learned what lives are really all about, through the wonder of Sasha’s first child, Weston Kristof Carr. Wes reminds us, every day, what an individual life means, how irreplaceable it is, and how beautiful.
Individual lives are what the Kristen Ann Carr Fund’s goals are about, too. Fifteen thousand people in America receive a diagnosis of sarcoma each year, but that’s not one story repeated 15,000 times, it’s 15,000 singular expressions of the same problem. Sarcoma is the form of cancer that can appear anywhere in the body, from a bone in the toe to the forehead, from a blood vessel to the skin. There are about fifty different basic types, and virtually innumerable subtypes: Kristen’s type of sarcoma is now understood to come in five different forms, each shockingly rare.
Rare diseases demand rarely found expertise. That’s why our focus remains on creating and supporting experts. There are now Kristen Ann Carr fellowships at Memorial Sloan-Kettering Cancer Center in surgery and in medical oncology. Dr. Murray Brennan has trained eighteen young surgeons in the name of Kristen, his former patient. This year’s surgical fellow is George Plitas. Our medical oncology fellowship is newer – completing its funding is our largest ongoing project. We have also moved the fellowship from the adult sarcoma program at MSKCC to the department of pediatrics, where we’ve long aspired to work with Dr. Paul Meyers. We’re glad to report that Dr. Meyers’s first KACF fellow is Srikanph Ambati.
We also offer a biennial Murray F. Brennan Award, a two-year grant given for the best research proposal from a former MSKCC fellow. (Because not every KACF fellow winds up specializing in sarcoma, and because not every sarcoma-oriented specialist can be a KACF fellow, the award is now open to all former MSKCC fellows.) The first award, received in 2010 by Dr. Steven Katz of Roger Williams Hospital in Providence, has been a rousing success. The sarcoma seminar RWH organized last March was the largest-ever gathering of sarcoma professionals in the United States. We have also learned that Dr. Katz’s immunology study has been accepted for oral presentation at the 2012 meeting of the Society of Surgical Oncology. We also support a liposarcoma research project led by Aimee Crago, an MSKCC surgeon who works in the Kristen Ann Carr Sarcoma Laboratory, under the direction of Dr. Samuel Singer.
Better yet, there are promising results from our participation in Picasso, a phase III pediatric trial of the drug palifosfamide. Picasso is run by Ziopharm, the company led by former KACF fellow Dr. Jonathan Lewis. We are proud and grateful that Ziopharm recruited us for Picasso. Phase III, by the way, is the last step before a therapy is approved for clinical use.
Sarcoma affects a disproportionate number of children, teens and young adults, who have very different psychosocial needs than the adults and seniors who are the largest group of cancer patients. That’s one reason we feel so privileged to put on each year’s MSKCC holiday party for pediatric outpatients, and to have Dave given the honor of portraying Santa Claus for pediatric in-patients. We also have supported a variety of youth-oriented programs, including Planet Cancer (now part of the Lance Armstrong Foundation), and Musicians on Call (which provides music to hospital patients from New York to Miami). From our beginning, the Sarcoma Update, a newsletter edited by Kristen’s close friend Ilyse Lesser, has been a key tool for the many, many sarcoma patients who receive its twice-annual issues.
Our fundraising efforts are very concentrated, more so this year because our annual Halloween party is being restructured as a spring event starting in 2012. James and David Dunning, Kristen’s cousins, now chair the spring event. We’re very proud of the many younger people Kristen knew who have remained an active part of KACF and anticipate that this involvement can be extended into other generations as well.
Our centerpiece event each year is the annual A Night to Remember, which takes place at Drew Nieporent’s wonderful Tribeca Grill in downtown Manhattan. It’s a party, not a sit-down dinner, because…well mainly, because Kristen preferred parties, and so do we. Its elements are elegant and funky-chic, but above all, delicious because Drew also contributes food from the entire Myriad Group of restaurants including Nobu, Corton and Centrico. Our honorary event chairs last year were Greg and Lisa Linn, whose entire family put in great effort with splendid results both economically and socially.
On April 21, 2012, our chairperson will be Alison Oscar. Ali has been one of our most committed volunteers since she began working with Barbara at Jon Landau Management more than a decade ago. The outpatient holiday party in particular owes to her its giant gift bags for the kids and for the entertainers who amuse them. (Ali’s greatest gift, though, may be the loan of her daughter Lexi to serve as the adorable elf in charge of presenting gifts to the kids.) Ali also works wonders in the sports and entertainment world for patients and loved ones, and she’s terrific at maintaining all sorts of connections for us in the medical world, too. In short, she’s one of our favorite people – she’s a favorite of a whole lot of people – and the spark and sparkle of next year’s event will emanate from her. If you’re there, she’ll be easy to find. Just follow your ears to the greatest laugh in the world!
This year, above all years, we are especially mindful of laughter and joy accompanying our determination and hard work. Babies carry that gift with them always. It is certainly the essence of Weston’s spirit.
Kristen never lost that spirit and she left us with the challenge of living up to it. We are required to love one another and draw in as many as we can to our embrace. We are responsible for making sure that the money we raise is spent wisely, but money can never be, for a minute, the primary thing we’re about. (It’s high up on the list though.) We are most of all meant to remember that it’s all about the lives of individuals who are fighting what can be the hardest, loneliest battles in our world.
This task is a gift Kristen gave us. It’s also a blessing that we are given by those who read these annual messages and respond in so many ways, not only with contributions. Thank you for honoring Kristen Carr and the work done in her name.