Today is #GivingTuesday, a worldwide day of giving. You can celebrate today by donating to our organization.
Who are we?
We are a small nonprofit that has grown organically through the love and support of friends and family to create a legacy in our son’s honor and memory. Our mission is to raise awareness, research funds and support for families fighting alveolar rhabdomyosarcoma and other rare childhood cancers.
Who is Shane?
Shane was our son. He was diagnosed at 8 months of age with stage 4 alveolar rhabdomyosarcoma, a highly aggressive, currently non-curable form of cancer. His chance of survival was less than 10%. The treatment options for him and others have been unchanged since the 1970’s. He endured chemotherapy, surgeries and radiation. At 19 months he passed away on 3/30/15 after a one year, two day battle.
What have we done?
We donated Shane’s tumors to the Children’s Cancer Therapy Development Institute (http://www.cc-tdi.org). Shane’s Legacy Gift of tissue after life has become a useful tool for rhabdomyosarcoma research, and has even helped a new phase of a clinical trial get started. The lab created a primary cell culture from Shane’s tumor … it grows extraordinarily aggressively and quickly, but the lab team says that makes it useful as a “the ultimate challenge” to find new treatments that slow it down. Many new drugs have been tried, and few have worked.
However, there is a bright ray of sunshine: the lab team has found that a particular drug does a great job in Shane’s cells to turn off the major mutation. The results from Shane’s mouse (and 15 other patients’ mice, also mostly from Legacy Gifts) are resulting in a new Phase I-B study of the drug and the drug-plus-chemotherapy for children with rhabdomyosarcoma. The reason this is so notable is that most new treatments for rhabdomyosarcoma were developed on mouse models from 1987, 1982 and earlier. Shane’s mouse leads the “new avatar army” of mouse models that show how contemporary patients will respond to newly-proposed treatments. We can’t be more excited to see if this new treatment with the drug plus chemotherapy will benefit other children with rhabdomyosarcoma.
Child life programs:
We are forever grateful for the assistance we received from the Children’s Hospital of Philadelphia’s Palliative Care Team’s child life program. Our child life specialist has played an important role in our children’s ability to grieve and cope with the death of their brother.
We continue to support this facet of their program in hopes that other families going through an unfortunate diagnosis can find the support they need.
Families affected by childhood cancer:
As a family we has experience a diagnosis and loss of a child through childhood cancer, we can relate to all the familial aspects that are affected by this. We adopt families during the holiday season to provide financial relief and stress of the holidays, so that they can enjoy their time with their family. We also provide gift cards and assistance throughout the year.
Thank you for your consideration!