The August issue of EMBO Molecular Medicine features an article authored by Children’s Tumor Foundation President and Chief Scientific Officer Annette Bakker, PhD, and Salvatore La Rosa, PhD, Children’s Tumor Foundation VP, Research & Development about the larger role foundations are playing within the rare disease research ecosystem. EMBO Molecular Medicine is a peer-reviewed, online open access journal dedicated to a new research discipline at the interface between clinical research and basic biology.
When I had just turned four years old my mother became very concerned. She noticed I had a lot of bruising. She thought I might have leukemia, but the bruises weren't going away. The pediatrician looked at my cafe au lait spots and measured my head. He then stepped out of the room and he brought one of the other doctors in the group in. By the time my mother and I had left, all five doctors in the group had looked at me and referred us to the genetics department at the Los Angeles children's hospital. When we left the pediatrician’s office, my Mom went straight to the library and looked up everything she could on NF.
By Kelly Rulle
Recently, I was asked the following, “What's one "survival tip" you'd like to share with other people living with neurofibromatosis (NF)?” So many things ran through my mind: dealing with bullies, hurtful comments, or painful days, how could I pick just one? But if I had to say just one thing, it would be, “Learn!”
Every August the Littlest Tumor Foundation hosts the NF Family Wellness Retreat in Clintonville, WI. This year, the retreat will take place from August 11-14 at the Imago Dei Village and is free of charge. The mission at the retreat is to strengthen the family unit, build compassion, and address NF manifestations through practicing a healthy lifestyle.
Synodos for Schwannomatosis, an international consortium of clinicians and scientists from multiple disciplines, was launched at a full team meeting in Toronto, Canada on May 1, 2017. At the conclusion of this inaugural meeting, we met with the leaders of this exciting new consortium, who spoke candidly about the meeting, schwannomatosis research, and what is at stake for this important project.