Dani’s Foundation Hosts First Annual Ewing’s Medical Forum

Dani’s Foundation, a national not-for-profit organization based in Denver, hosted an inaugural Ewing’s Sarcoma Medical Advisory Forum July 18 - 20 in Denver.  A panel of nationally recognized medical and professional strategists gathered together with the goal of assisting the Foundation in their efforts to review past milestones relating to Ewing’s and working toward strategizing for the future of combating the Ewing’s Family of Tumors.  

 

Michele Ashby, Founder and President of Dani’s Foundation, was instrumental in organizing the inaugural meeting.  “What we attempted to accomplish was to assemble a panel of experts to would work with our Foundation in planning our future efforts.  We will be working to advocate for improved treatment protocols for all cancer patients and seek ways in which to expand research that will ultimately find the cause and the cure for all Ewing’s Family of Tumors.  The Forum accomplished its goals of sharing masses of information pertaining to Ewing’s; establishing future collaborative partnerships and reigniting passion to pursue greater projects on behalf of the  Ewing’s population.  

 

Ewing’s Sarcoma is considered as one of the orphan cancer diseases, striking only 500 pediatric patients each year.  Dani’s Foundation is committed to keeping the Ewing’s Family of Tumors in the forefront with the goal of finding the cause and ultimately the cure so that no other children and their families will have to suffer and/or succumb from this deadly disease,” explained Ashby.  

Other professionals who joined Ashby and the Dani’s Foundation Board of Directors included Dr. Henry Heimlich, The Heimlich Institute, Cincinnati, OH; Dr. Jeffrey Toretsky, Lombardi Comprehensive Cancer Center, Georgetown, MD; Dr. Lorrie Odom, Rocky Mountain Pediatric Hematology Oncology, Denver, CO; Dr. Larry Wiese, Therapheresis, Inc., San Diego, CA: Misty Rowe, PhD, Golden, CO;  Dr. Kenna Ducey-Clark, DC, Denver, CO; and Mr. Jason Greer, 17 year Ewing’s survivor, Missoula, MT. 

Dani’s Foundation is now in the process of organizing for a formal strategic planning meeting which will incorporate information from the Medical Forum to assist in developing immediate and long-range planning for the future of the Foundation.  Once the final plan is completed, Dani’s Foundation will embark on a comprehensive plan including support and resources for Ewing’s patients, organized advocacy efforts for improved treatments and the initiation of an organized campaign designed to fund Ewing’s and other pediatric cancer initiatives. 

Prior to the conclusion of the 2008 Ewing’s Forum in Denver, the assembled group developed a listing of key issues that need to be addressed in the days ahead.  Dani’s Foundation will work to advocate for the following issues: 

• The need to develop better diagnostic tools for Ewing’s Sarcoma.
• The need to develop prognostic tools that separate patients with localized disease who will do well from those who will relapse.
• The need to seek out better ways to treat localized disease to decrease long-term toxicity.
• The need to improve treatments for metastatic disease, especially non-pulmonary metastases and relapsed disease.
• The need for more research on targeted agents.
• The development of more classes of chemical synthesis.
• The development of collaborations between structural biology groups and other organizations
• The development of funding for chemists who designate work to treatment options. 
• The need to develop a comprehensive list of the major oncology centers, nationally and throughout the world, with the goal of assisting Ewing’s patients/family members in decision making.
• The need to advocate for the merging of government, industry and philanthropy partnerships with the goal of advancing treatment protocols and research for all diseases affecting Americans.

If you would like to join Dani’s Foundation in advocating for any of the issues listed above, contact Martha Simmons at 303.601.1881 or via email to martha@danisfoundation.org to join our TEAM to beat Ewing’s.