In 2024, the Children’s Tumor Foundation has expanded our NF Awareness Month campaign to Make NF Research Visible. We believe that the NF community stands on the brink of transformation, and NF Research has the power to transform lives. Our new portrait collection features clinicians, researchers, and patients and highlights visibility’s impact on NF research. The clinicians and researchers featured in our new campaign video embody the passion and commitment shared by the entire NF community – a commitment to ending neurofibromatosis and schwannomatosis.

Watch the video here and read the transcript below.

VIDEO TRANSCRIPT

“It really does take a whole village to take care of any one NF patient.”
– Kara Anstett, MS, CGC, Genetic Counselor

“From neuro-oncology to neurology to psychology, and then all the rehab specialists to help with activities of daily living, like occupational therapy or physical therapy, audiology, speech-language pathology. And then you’ve got your education team for kids coming through the school district and their educational career.”
– Heather Thompson, PhD, CCC-SLP , Speech Pathologist

“I started my career path as a basic scientist studying Schwann cell biology. But as I met the families affected by NF, I realized that it’s more meaningful research when you have the potential of impacting families that are living with the condition.”
– Cristina Fernandez-Valle, PhD, Professor, Neuroscience

“With the neurofibromatosis, there is very real immediate opportunity to help people living with those conditions. From the scientific side, there may not have ever been a more exciting time to be in the field.”
– Jaishri Blakeley, MD, Neurologist, Neuro-Oncologist

“What’s most exciting for me in this field is the direct interface I have every day with basic and translational science researchers who teach me how to take care of my patients. And likewise, I get to take what I’ve learned from my patients and bring it back to the laboratory and say, these are the important questions we have to answer.”
– Christopher Moertel, MD, Pediatric Hematologist and Oncologist

“In addition to caring for an amazing group of patients and families, the research opportunities have been tremendous. We now have the tools to not only learn about these conditions, but also make a huge impact in advancing medical care.”
– Scott Plotkin, MD, PhD, Neuro-Oncologist and Neurologist

“I feel like I’ve learned probably more from my patients with NF1, NF2-related schwannomatosis, and schwannomatosis than I’ve maybe contributed to them. And I hope that in the future, I can learn more to provide even more resources and support.”
– Heather Thompson, PhD, CCC-SLP , Speech Pathologist

“Working with people with NF has been an incredible privilege and I think very rewarding.”
 – Carlos Romo, MD, Physician, Neuro-Oncologist

“The physicians, the researchers, the patients, the foundations, everybody is in it together. Everybody is truly invested just in one goal, which is moving the field forward for the patients.”
 – Michael J. Fisher, MD, Pediatric Hematologist Oncologist

“Our clinicians are not just medics, but they also care about, holistically, about the person that they have in front of them. And that, I think, makes this community also very special because now you’re working with people that care about people.”
– Annette Bakker, PhD, President, Children’s Tumor Foundation; Chair, Children’s Tumor Foundation Europe