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Rhabdomyosarcoma Research

Please send your donations to:

Trustees of the University of Pennsylvania
C/o Dr Frederick Barr MD,PHD
University of Pennsylvania School of Medicine
505C Stellar Chance Laboratory
422 Curie Blvd
Philadelphia, PA 19104-6082

One out of every 330 children will get cancer before age 20.  Despite major treatment advances for most childhood cancers, improved treatment of alveolar rhabdomyosarcoma has lagged.  The statistics for survival of metastatic rhabdomyosarcoma are dismal.  We need to find new treatment methods if we are going to start saving these children.

Dr. Barr's research into Alveolar Rhabdomyosarcoma, has led to the realization that a small piece of either chromosome 2 or 1 is moved to chromosome 13.  This is called a translocation.  In alveolar rhabdomyosarcoma translocations, the PAX3 or 7 gene gets moved next to FKHR, resulting in the creation of a new gene that stimulates tumor growth.  The affected genes produce a new protein that isn't found in normal cells.  This is vital information.  It can be used to better diagnose and, hopefully, to cure this cancer.  Dr. Barr's laboratory is working to determine how this new protein causes cancer; and, more importantly, how to stop this from happening.  He is also looking for ways to help individualize viable treatment plans.

Our son Suryan was 18 years old.  He was just beginning his life as a college student at FSU, when he was diagnosed with rhabdomyosarcoma.  Suryan was not only the joy of our lives, but each person he touched told us how blessed they felt for knowing him.  He inspired joy and promise in others by never giving up or giving into the cancer.  He lived each day as if it were his last, embracing what life he had left with a joyful abandon and passion for running, surfing, guitar playing and his love of learning at FSU.  Suryan endured 30 months of treatments.  This included 2 different clinical trials, 20 months of chemo, 4 months of radiation and countless hospitalizations.  Suryan lost his battle.

It was his dream, and ours, that no child or parent should ever have to endure the devastation this cancer causes without hope and promise for a cure. We are dedicated to that purpose.  In Suryan's name, we are trying to fund research that will enable other children to survive this devastating cancer and have the promise of life.

Suryan was one of about 350 children in the United States who develop Rhabdomyosarcoma each year.  Because this disease is rare, it doesn’t often make the news; or attract funding and medical research.  It takes dedicated individuals like Dr. Barr to pursue research into rhabdomyosarcoma.  The discoveries he is making may ultimately lead not only to a cure for all children with alveolar rhabdomyosarcoma, they may lead to a better understanding of the underlying causes of cancer.

We urge you to donate to this important research and we thank you for your interest in saving children's lives.

Thank you,  Laurie & Stephen Landes