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NF1 Clinical Trial of Selumetinib “Most Exciting” Says National Cancer Institute Director

Aug 16, 2018

Speaking before the House Energy and Commerce Committee of the U.S. House of Representatives on the implementation of the 21st Century Cures Act, Norman (Ned) Sharpless, M.D., Director of the National Cancer Institute (NCI) was asked by Missouri Congressman Billy Long, “Can you tell us about the most exciting thing that is being supported in the Cancer Moonshot?”

Sharpless focused his answer on the NCI’s Rare Tumor Initiative and the clinical trial presented in June at the ASCO Conference by Andrea Gross, MD of the NCI about the selumetinib (MEK inhibitor) clinical trial treating inoperable NF1 plexiform neurofibromas.

Leading the Way: Children’s Tumor Foundation Annual Report

Aug 7, 2018, Posted in Latest News

We’re proud to announce that our latest annual report, Leading the Way, is now available to read online. This report of the Foundation’s activities during the 2017 fiscal year highlight progress in research, awareness, patient support, and the accomplishments of a vibrant NF community in the fight to end NF. The financial pages offer transparency regarding CTF’s expenditures, which have earned the Foundation a four-star rating from Charity Navigator once again. And of course, none of this would be possible without the support of all of you – the thousands of donors who give to ensure that NF research and programs continue. 

‘Pig Models’ Advance the Study and Treatment of NF1

Aug 2, 2018, Posted in CTF in the News, NF1, Published, Science, Synodos

Synodos for NF1 Research Published in Leading Journal

Children’s Tumor Foundation research led by its Synodos for NF1 team has demonstrated the ability to replicate NF1 manifestations in pigs, as reported in JCI (Journal of Clinical Investigation), a leading peer-reviewed publication of the American Society for Clinical Investigation. These manifestations include café-au-lait spots, neurofibromas, axillary freckling, and learning and memory neurological deficiencies. The significance of this advancement is that it allows researchers and clinicians, for the first time, to test and study potential NF treatments in large animal models that mimic human manifestations of neurofibromatosis.

Care of Adults with NF1, a new resource

Jul 24, 2018, Posted in Science

Care of Adults with NF1, a new resource, has been published by the American College of Medical Genetics and Genomics (ACMG). It offers voluntary guidelines for medical management based on published reports and the expertise of the authors, who are leaders in NF1 medical care.

We are sharing this news with you as a resource to manage your own care. You can get this article free of charge at Springer Nature: https://rdcu.be/MFHJ 

An 11-Year-Old’s Vision to Find a Cure

Jul 18, 2018

In 2014, when Chloe Peterson of Yakima Valley, Washington was just 11 years old, while her tween peers were busy checking out Disney’s Frozen, Chloe was finding a way to make a difference. She says, “I wanted to do something to spread awareness for local charities and causes close to my heart.”