2014 NMTRC Symposium in Grand Rapids, MI

Each year, the NMTRC (Neuroblastoma & Medulloblastoma Translational Research Consortium – nmtrc.org) holds a conference discussing the advances made in neuroblastoma research in the past year, and the direction their group is focusing on for the future. This is our 4th year attending (we also wrote about the 2012 and 2013 events).

This year, over 120 physicians, researchers, parents, and non-profit managers gathered in Grand Rapids, Michigan as a powerhouse of focus on curing neuroblastoma. The discussions this year revolve around personalized antibody treatment, sequencing and molecularly guided therapy, and preventing neuroblastoma relapse.

A powerful opening from Jude Sibley began the conference. Her amazing daughter, Lily-Mae, was one of 7 kids in Ireland who will get neuroblastoma each year. Irish hospitals have no clinical trials for neuroblastoma, and when she was diagnosed the doctors told Jude her daughter had 3-5 weeks to live. That was in 2012, and today Lily-Mae is still dancing with her family. Jude and Lily-Mae’s dad Leighton found the DFMO trial being ran by the NMRTC, which has incredibly promising results in preventing relapse, and travel from Ireland to Michigan every 3 months to participate. “Our kids need to get on with the business of living. It is us who worry,” said Jude. With a current 70% chance of relapse after neuroblastoma remission, and no cure for relapse, preventing relapse is a huge win.

The symposium has a wealth of medical minds present from all over the country. Lynne P. Yao, MD, the Associate Director, Office of New Drugs, Pediatric and Maternal Health Staff for the FDA joined us via WebEx, and Greg Reaman, MD, Associate Director of Oncology Sciences with the FDA also spoke, and are excited about what the NMTRC is doing. You can download the full program here (pdf).

Dr Giselle Sholler, chair of the NMTRC, shared results of the DFMO trial Because of Ezra is helping to fund. The results are extremely promising, and will be publicly available soon.

Conferences like the NMTRC Symposium are great for a variety of reasons. As parents of a child who died of neuroblastoma, Robyn and I find a great value in spending time with other parents who’ve shared our experiences in some way. There is a common bond which allows us to laugh and cry easily while talking about our children and cancer. The researchers at the conference are warm and passionate, discussing new ideas and the details of current studies at length both with parents and physicians. Many innovative ideas spring from the conversations held over lunch, dinner, and throughout the day’s presentations.

There’s still another day and a half of the conference left. August Calhoun, the VP/GM of Dell Healthcare and Life Sciences will be talking about Dell’s vision for the future of medicine. Dell has been an amazing supporter of childhood cancer research and the NMTRC as well.

We’re motivated to continue toward a cure for neuroblastoma. The annual growth in this conference, along with other neuroblastoma-focused conferences, is powerful to see, and gives us so much hope. We can beat this, together. Thanks for all your support.