Cold Spring Harbor Laboratory faces off against a rare cancer with launch of Sarcoma Research Project

l-to-r: Clark and Pam Gillies, Bruce Stillman, Chris Vakoc, Nancy and Tom Arcati, Phil Renna, Paul Paternoster

Initial funding from LI groups: Friends of T.J. Foundation, the Christina Renna Foundation, the Michelle Paternoster Foundation for Sarcoma Research and The Clark Gillies Foundation

Cold Spring Harbor, NY – Cold Spring Harbor Laboratory (CSHL) was joined on October 30 by the Friends of T.J. Foundation, the Christina Renna Foundation, the Michelle Paternoster Foundation for Sarcoma Research and the Clark Gillies Foundation to announce the Sarcoma Research Project (SRP). With initial funding from these local groups, CSHL is launching a highly targeted effort to combat a rare and deadly type of sarcoma called rhabdomyosarcoma (RMS).

Each year, more than 12,000 people in the U.S. are diagnosed with sarcoma cancers. “Cancer isn’t a single disease,” explained CSHL President & CEO Bruce Stillman, Ph.D. “There are hundreds of types and we must focus on individual types like RMS to find specific therapeutics that will save lives.”

The broad goal of the Sarcoma Research Project is to establish a research group dedicated to the biology of sarcomas. By focusing on rhabdomyosarcoma in the project’s initial stage, CSHL scientists hope to unlock secrets of therapeutic intervention that may apply to other sarcomas. Sarcomas are cancers that develop from connective tissues such as muscles and fat. They can affect both children and adults. RMS specifically involves cells that normally develop in skeletal muscles. the growths are most often found in the head, neck, urogenital tract and the arms and legs. RMS is most common in children, but can also affect adults.

“The pain of losing a child or young adult to RMS is so heightened by the lost years for them, their families and society,” said Nancy Arcati of the Friends of T.J. Foundation, one of the groups providing support for the SRC. “If serious research efforts were started years ago, perhaps the rarer sarcomas would be more treatable or even curable today. As cancer research advocates, we understand the importance of taking bold steps and we are so grateful to partner with CSHL and our partner foundations with a very promising research program under way.”

Ice hockey legend Clark Gillies, a star of the NY Islanders who now heads The Clark Gillies Foundation, observed that “Long Island is very fortunate to have a world-class cancer research institution like CSHL leading RMS research.” He added: “On behalf of The Clark Gillies Foundation and our teammates in this effort, I’m proud to be here at the face-off against RMS.”

Lead funding for the CSHL Sarcoma Research Project came from the Friends of T.J. Foundation, the Christina Renna Foundation and the Michelle Paternoster Foundation for Sarcoma Research.

“The Christina Renna Foundation has proudly supported cancer research at CSHL for the last seven years,” noted Foundation Director Phil Renna. “Our Foundation is named after my daughter who died from rhabdomyosarcoma, so we are especially thrilled to help start this targeted research initiative.”

As a first step, CSHL has already hosted a key conference on RMS. Convening in May 2014, it brought together researchers and clinicians from around the world to identify the most promising avenues for future research. Insights from this meeting set the course for the SRP.

CSHL Assistant Professor Chris Vakoc is spearheading the initial research. Using cutting-edge molecular biology, Vakoc’s team will pinpoint genetic weaknesses within RMS cells. His strategy has already been successful in developing a new drug candidate for AML (acute myeloid leukemia), now in clinical trials. CSHL is also collaborating with Dr. Charles Keller, a physician and professor at Oregon Health and Science University, who is one of the world leaders in RMS research. For more about the CSHL Sarcoma Research Project, visit

About The Christina Renna Foundation

The Christina Renna Foundation is a 501(c)(3) public charity supporting children’s cancer research and furthering awareness and education through the support of cancer groups and outreach programs for the direct support of those in need. For more information, please visit:

About The Clark Gillies Foundation

The Clark Gillies Foundation is a non-profit corporation developed to help children who are physically, developmentally, and/or financially challenged. This assistance can be in the form of payments for medical services, family financial aid, events to enhance the quality of life, and many other forms. The goal is to help children improve the quality of life and be of assistance in a time of crisis. For more information, please visit:

About The Friends of T.J. Foundation

The Friends of T.J. Foundation was founded in 2009 after T.J. was diagnosed with a sarcoma, at the age of 31. T.J., along with his college friends, were the founding members. His first goal was to do everything he could to get well and then transfer his energy to work on the Foundation.

In 2013, at the age of 34, T.J. lost his fight along with his hopes and dreams of being with his family and continuing his career as an anesthesiologist. Now, his family and friends are determined to continue the work of the Foundation. The hopes and dreams for him to get well have been transferred to a “Hope for Tomorrow.” For more information, please

About The Michelle Paternoster Foundation for Sarcoma Research

The Michelle Paternoster Foundation For Sarcoma Research is a 501(c)(3) organization founded in 2013. The foundation supports research that is targeted at finding cures for sarcomas, as well as research that attempts to develop more effective treatment regimens than those currently available.

About Cold Spring Harbor Laboratory

Founded in 1890, Cold Spring Harbor Laboratory (CSHL) has shaped contemporary biomedical research and education with programs in cancer, neuroscience, plant biology and quantitative biology. The Laboratory has been home to eight Nobel Prize winners and has been a National Cancer Institute-designated Cancer Center since 1987. Today, CSHL’s multidisciplinary scientific community is more than 600 researchers and technicians strong and its Meetings & Courses program hosts more than 12,000 scientists from around the world each year to its Long Island campus and its center in Suzhou, China. For more information, visit

Written by: Dagnia Zeidlickis, VP of Communications | pubaff@cshl.

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