Dani’s Foundation — a small team with big results
Originally published by Denver Life Magazine in May-June 2012
The loss of a daughter, Dani Stell, to Ewing Sarcoma was the driving force behind Michelle Ashby’s decision to create Dani’s Foundation, a non-profit organization that aids survivors and the families of those who are affected by childhood cancer, especially Ewing Sarcoma.
“I knew this was my mission in life,” says Ashby, founder of Dani’s Foundation. “We were picked for a reason.” Dani’s Foundation celebrates the spirit of her beloved daughter. Stell was diagnosed with Ewing Sarcoma after a lump was found in her waist. After five misdiagnoses within six months, Stell was prescribed brutal chemotherapy but eventually lost her battle in April 1999.
Dani’s Foundation links survivors with communities and resources that will help them gain scholarships, grants, financial aid, patient services and current information on cancer research. Martha Simmons, the executive director of Dani’s Foundation, and Ashby have helped survivors worldwide, as they operate 365 days a year to raise funds and provide hope for those who have childhood cancer.
“Before Dani’s Foundation, our only source for support was our doctor,” says Ashby. “Most people won’t see this type of cancer in a year or even 30 years of practice. We are now one of the places where people find resources.”
Through the foundation’s Sarcoma Patient Registry, people around the world can connect with the most up-to-date clinical trials and cancer findings. The registry is a place to store, interpret and analyze data on those who have been affected by pediatric sarcomas, and it provides a list of patients around the nation who have gone through it.
Dani’s Foundation has 150 volunteers in the Colorado region and 300 members worldwide. Patient testimonies from across the United States and as far as Milan, Italy, testify that Dani’s Foundation is their source for community and assistance, such as financial aid to pay for treatments and living expenses.
“Something had to happen for the cancer to be discovered. But Dani had a lump that was undetected, and we all thought it was growing
pains,” says Ashby. The Ewing Sarcoma that caused Stell’s death went undetected and metastasized to her brain with malignancy beyond the control any treatment could curb.
“The Ewing Sarcoma protocol for Dani was the same for children 20 years ago. The children now have the same treatment as Dani,” says Ashby. Having to witness her own daughter deteriorate drives Ashby to work for a softer protocol with less side effects. “Long term effects for these kids to survive are severe, including infertility, and at times losing some brain function,” says Ashby.
Currently, Dr. Jeffrey Toretsky, at the Lombardi Comprehensive Cancer Center at Georgetown University, is the spearhead researcher for Dani’s Foundation. He is working on a compound that will work on the molecular level. This treatment will be more intense at a localized cellular level with possibly no side effects.
Having the goal to cure a disease is a worthy and noble gesture, and with such a prolific team as Ashby and Simmons, it comes with style. Annually, Dani’s Foundation holds the Mad Hatter’s Ball, which is an Alice in Wonderland themed festive costume event with dancing and hat competitions benefiting pediatric sarcoma research.
“Besides the Mad Hatter’s Ball, we are most proud of our Community Education Breakfast. It is a breakfast where we have the opportunity to have our story told by patients, family members and researchers. We raised over $85,000 in pledges for the Foundation and generated many, many volunteers for our organization,” says Simmons. “Dr. Toretsky also speaks at the event, to educate patients and everyone about pediatric sarcoma.”
Along with those events, an upcoming PET PALS, for translational research of veterinary medicine to cancer research, is in progress. This collaboration with veterinary oncologists, medical oncologists, the pharmaceutical industry and academic research is crucial for new discoveries concerning pediatric sarcoma. The most recent donation by Dani’s Foundation was given to Colorado State University’s Animal Cancer Center in order to find comparative oncology studies on sarcomas.
With these efforts from a small but powerful team, the world is much closer to finding a cure to pediatric sarcoma. Dani’s Foundation is an exceptional example for everyone; they provide hope for the future.
MORE INFORMATION
Ewing Sarcoma is a bone or soft tissue malignant tumor most commonly found in the pelvis, femur, humerus, ribs and clavicle areas of the body. It is listed as one of the least occurring bone tumors for childhood cancers by the Center for Disease Control and it is categorized in the same familial strain of cancer as Osteosarcoma.
If you would like to join the Sarcoma Patient Registry, please send an email to
sfa@registrypartners.com with your contact information and the most convenient time and method to contact you, or you can call 866.501.6780.
To donate, volunteer or get more information about upcoming fundraisers, visit danisfoundation.org
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