Here at the Children's Tumor Foundation, we champion a team approach to ending neurofibromatosis. And you are a vital part of our team. Together we are transforming lives and building brighter futures for millions of people like Jane Constable, Philip Moss and their families. Read about Jane and Philip below and join us in celebrating the tremendous success they have seen since their enrollment in the clinical trial of the MEK inhibitor selumetinib (AZD6244 hydrogen sulfate) at the National Institutes of Health.
JANE CONSTABLE was only a couple of months old when her pediatrician pointed out to her parents, Kristina and Todd, that she had a number of café au lait spots on her body. They were referred to another specialist, and around that time started to notice swelling in her cheek. It wasn’t long before doctors diagnosed young Jane with neurofibromatosis type 1, or NF1. Her first MRI at only 18 months old revealed the large tumor that she has now.
PHILIP MOSS was about to start kindergarten when his neck became unusually swollen. His parents, Renie and Philip (Dad is Big Philip and son is Little Philip) took him to their pediatrician, who thought it could be a swollen lymph gland, and treated it as such. However, three weeks later, their doctor informed them that the biopsy revealed that Little Philip had a neurofibroma tumor, and that he had NF1.
Intertwined with the nerve functions in their small bodies, including the throat, tongue, neck and shoulders, and wrapping around arteries and veins, these tumors are essentially inoperable, and have a 10-15% chance of turning malignant.
And there was nothing either Jane’s or Philip’s parents could do. They had to watch the tumors grow and wait for the impact it would have on their children’s lives. But thanks to Children’s Tumor Foundation research—supported by you, our friend and partner in the NF community — the lives of Jane and Philip have changed dramatically.
The images speak for themselves. Young Jane’s tumor has shrunk 30%, and Little Philip’s tumor has shrunk an incredible 50% since their participation in a clinical trial at the National Institutes of Health (NIH). While not yet a cure, their lives have improved, both visibly and physically, with enhanced mobility and better health. Their smiles speak a thousand words.
This progress is because back in 2008—with the support of donors like you—the Children’s Tumor Foundation made a major investment in the NF Preclinical Consortium. The groundbreaking research conducted by that consortium of scientists demonstrated that MEK inhibitors have significant impact on tumor size in animal models. That research now informs the clinical trials taking place today at the NIH, and their incredible results.
Jane and Philip are not alone. Over 70% of the participants in this particular trial have seen tumors reduce in size by 20-50%. The NF research field has not seen results like this before. But as amazing as they are, we want 100%. Our goal is 100% tumor reduction in 100% of patients. A bold goal, but with your support, we can make this goal a reality.
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NF is one of the world’s most common genetic disorders. But it takes many forms, and can be hard to diagnose and treat.
Research is the key. And the NF Registry is the key to research. If you have been diagnosed with any form of neurofibromatosis (including NF1, NF2, and schwannomatosis), or if your child has NF, unite with thousands of others with NF and join the NF Registry today.