4th Annual Childhood Cancer Caucus Summit

In honor of Childhood Cancer Awareness Month, the Congressional Childhood Cancer Caucus convened its 4th annual summit on September 19, 2013.  Children's Cause was proud to organize a reception honoring the Caucus and participate in the summit activities the following day.  I was especially excited to meet many advocates and medical experts from the community whom I had heard so much about and look forward to working with in my new role as Director of Public Policy! At our reception, we were joined by nearly 100 guests, including advocates from around the country, Members of Congress, Congressional staff, childhood cancer patients and survivors.  The event was a great success thanks to the many partners who helped make it happen. One of our partners, Liz Scott of Alex's Lemonade Stand Foundation, was a featured speaker, remarking on the crucial role of parent advocates to advance policies to improve the lives of children with cancer.

We were honored to be joined by three families currently staying at the NIH Children's Inn.

We were also honored to hear from Childhood Cancer Caucus Co-Chairs Representatives Michael McCaul of Texas, Chris Van Hollen of Maryland who spoke to the importance of working together in a bipartisan (or rather nonpartisan!) way to address the needs of the childhood cancer community.  Representative Jackie Speier of California joined us, as well, and spoke about her bill the Childhood Cancer Survivors' Quality of Life Act.

CCCA Exec. Director Maureen Lilly introduces Rep. Michael McCaul (TX)

Our other distinguished speakers consisted of one long-time friend and one new friend of Children's Cause. Our long-time friend, Dr. Peter Adamson of COG, told us that what motivates him to succeed are the personal stories of his patients including learning this week that a patient he treated over 20 years ago is now expecting a child.  Our new friend, Lucia Cruz, is a survivor of childhood cancer who spoke eloquently about the long-term health care impact of being a survivor, though it certainly doesn't slow her down - she recently returned from two years as a Peace Corps volunteer in The Gambia!

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The summit itself took place the next morning with informative presentations.  The kick-off speech was given by Caucus Co-Chairs Representatives Van Hollen and McCaul, who thanked the advocates for our work to bring attention to childhood cancer throughout the halls of Congress.

Dr. Adamson presented on the need to prepare for future advancements in research technology and ensure we expand biorepositories.  He highlighted the Caroline Pryce Walker Conquer Childhood Reauthorization Act as a priority to achieve this goal.  Dr. Crystal Mackall from NCI talked about the recently established Pediatric Dream Team, a public-private partnership focused on creating new treatments for the most challenging childhood cancers.  Finally, Dr. Andrew Litt from Dell spoke of their partnership with T-Gen to map the genomes of patients' tumors to see if existing therapies might be applicable to certain children's cancers.  In addition, they've created a cloud platform that facilitates communication and the rapid sharing of information between members of a tumor board, researchers and even the parents of the patient.

Rep. Van Hollen (MD) speaks at the Childhood Cancer Caucus Summit

Other speakers included Dr. Patrick Leavey of Children's Medical Center Dallas, who talked about improving the quality of survivorship care, Dr. Kim Kramer of Memorial Sloan Kettering who spoke of promising results of radioimmunotherapy in brain tumors, Nancy Goodman of Kids v Cancer who spoke about implementation of the Creating Hope Act, and Brianna Cummerford, an energetic 15 year-old cancer survivor and spokesperson for Hyundai Hope on Wheels.

All in all, we thought this year's reception and summit went superbly and are ready to use the energy of this week to move us closer to reaching our shared goals.  Did you attend the summit? What did you think?