CHEMOWARRIOR: the eli sidler foundation is dedicated to increasing awareness and raising money to fund research into the cause and treatment of Ewing’s Sarcoma, a rare and often deadly childhood cancer. We have seen firsthand what this devastating yet mostly-overlooked disease does to those afflicted with it and we are compelled to help.
We look forward to a world where Ewing’s Sarcoma is detected early and is successfully treated. Until we get there, we will work to improve treatments, long-term survival rates and quality of life for children, adolescents and young adults with Ewing’s Sarcoma.
Our Pledge to Donors
CHEMOWARRIOR: the eli sidler foundation was created as an all-volunteer non-profit organization. We are a 501(c)(3) public charity and all donations are tax deductible to the full extent of the law. We are committed to giving at least 90% of every dollar raised to individual researchers or organizations conducting research into better treatments for Ewing’s Sarcoma, with an emphasis on those projects that are on track to get to patient clinical trials within two years or less. We will hold the recipients of our funds accountable and issue periodic reports on the status of the projects we fund.
Meet Eli – Our “Chemowarrior”
In 2004,our son, Eli was diagnosed with PNET/Ewing’s Sarcoma at the age of eight. His cancer was located in his spine and was localized. The initial treatment lasted a year and involved 14 rounds of inpatient chemotherapy, six weeks of radiation therapy and surgery. Mouth sores, nausea, vomiting, infections and not being able to eat or even swallow for more than a year were his treatment “side effects.” After completion of his treatment, Eli was free of disease until a routine scan two years later showed a recurrence. A second surgery and another year of chemotherapy followed. He was then disease-free until a second recurrence nine months later. More treatment and surgery followed until a third recurrence six months later and this time, the cancer had spread to his lungs.
Eli endured another surgery, additional radiation and more chemotherapy but to no avail. In March of 2012 he woke up paralyzed from the waist down and it was discovered that the disease had spread all up and down his spine in a three-week period after his most recent scans in that area were determined to be stable. He tried to make the best of his new situation but the cancer progressed and after an eight-year battle he passed away on June 24, 2012 at the age of 16 with his parents and grandparents by his side.
Eli was a remarkable young man whose example of living life to the fullest even under adversity was an inspiration to many people. His father bestowed on him the nickname “Chemowarrior” to symbolize his courage and Eli proudly incorporated that name into his identity.
Each year around 13,500 children are diagnosed with pediatric cancer in the US.
CHEMOWARRIOR – the eli sidler foundation
Despite their toll on the 13,500 young people of this country diagnosed with cancer every year, pediatric cancers receive very little attention and support among governmental and private organizations. Just over three percent of the National Cancer Institute’s 4.8 billion dollar budget is allocated to pediatric cancer. The American Cancer Society – our nation’s largest cancer organization – directs only one percent of funding to pediatric cancer research. The pharmaceutical industry views childhood cancers as “rare” and conducts very little research into better treatments because there is no profit motive. In the last 20 years, the FDA has approved only two drugs for childhood cancer and half of all chemotherapies used for children’s cancer are over 25 years old.
Ewing’s Sarcoma refers to a family of tumors located in bone and soft tissues. It accounts for 1 – 2% of all pediatric cancers but is the second most common type of pediatric bone cancer. The five-year survival rate with localized disease is 65 – 70%; with metastatic disease, the survival rate drops to 10 – 25%. It can recur many years after the original treatment has ended. There are no identifiable risk factors for Ewing’s Sarcoma except being a Caucasian male between the ages of 10 and 20.
It is not unusual that by the time this cancer is diagnosed it will have metastasized. And even if the disease is localized, there is micro metastatic disease commonly present that cannot be detected by a scan or other test. For this reason, treatment involves the whole body and is usually a combination of chemotherapy, radiation therapy and surgery. Treatment for Ewing’s Sarcoma is long, aggressive and harsh and the majority of survivors do not emerge from treatment unscathed. Amputations, radiation damage to the brain and body, secondary cancers, growth problems and infertility are not uncommon among Ewing’s survivors.
As a rare cancer among pediatric cancers, Ewing’s Sarcoma fares even worse when it comes to funding for research and drug development. That is why private money is desperately needed to fund innovative research projects that would not otherwise happen.
CHEMOWARRIOR: the eli sidler foundation was created to honor the life of Eli and others who are battling or who have lost their battles with Ewing’s Sarcoma. Learning from our experiences, we will dedicate our foundation to helping fund research for better, less debilitating treatments for Ewing’s Sarcoma. Under the direction of our Medical Advisory Board we will actively seek out new and ongoing research projects. After a thorough review process, we will provide the researchers or institutions whose projects show the most promise with financial support for their work.
Our foundation is governed by a Board of Directors. Consisting of 7 individuals, the board is made up of family, friends, peers and professionals – all of who loved Eli and have a strong desire and motivation to bring Ewing’s Sarcoma to its knees. Board members will serve for terms of one to three years. We will also create a Medical Advisory Board to assist in identifying the most promising research and determining the actual recipients of funds. This board will be comprised of pediatric oncologists and other medical professionals, all with expertise in Ewing’s Sarcoma.
Working with a core group of local volunteers and larger base of national supporters, CHEMOWARRIOR: the eli sidler foundation will raise money and awareness via online marketing for personal donations and merchandise sales, solicitation of business donations and the creation of special events.
Funds will be disbursed to researchers or organizations on an annual or semiannual basis. The frequency will be determined by the amount of money raised and the research work that is being conducted. The foundation will publish information about the research projects it is funding and track the results of those projects.