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4 Women | 3,000 miles | 1 Cause                  NF Endurance Races Across America

on Wednesday, 17 June 2015. Posted in Foundation News & Events, Blog

RAAM Share GraphicBeginning Saturday, June 20, 2015, members of the NF Endurance Race Across America team will embark on an extraordinary journey that will test their physical limits, mental resilience, and commitment to a cause. As competitors in Race Across America (RAAM), the team will endure 3,000 miles on their bicycles across the width of the North American Continent. The route will take them across 12 states, from the Pacific Ocean to the Atlantic Ocean.

Race Across America – Meet the Team!

on Tuesday, 16 June 2015. Posted in Blog

Team collageFour women from the Children's Tumor Foundation's NF Endurance Team will compete in Race Across America (RAAM) to raise awareness and money for NF research. RAAM is a 3,000 mile bike race that begins in Oceanside, CA and ends in Annapolis, MD. This 4-woman team, CrankNF For A Cure, will race 24/7 in a relay style, leaving one rider on course at all times. As a team they will cover about 450 miles a day and set a goal to finish in (under) 8 days and 5 hours. The team will be accompanied and supported by an 11-person crew (read more about them here).

Keep reading to meet the team!

Why we're committed to Ending NF: "Miles needs it more than I do."

on Friday, 12 June 2015. Posted in Blog

noah and milesHere at CTF we often hear stories about the beautiful generosity of those who participate in the numerous events we hold around the country. Sometimes, though, a story grabs our attention and brings tears of gratitude to our eyes. Today we were gifted with one such story.

Jennifer White, one of our dedicated NF Walk Coordinators, shared an email with us today that we wanted to pass on to you. Monica Roberts, a committee member for the Iowa NF Walk wrote the following about the impact of her volunteerism on her children:

2015 NF Conference Poster Session Winners

on Monday, 08 June 2015. Posted in Foundation News & Events, Blog

Poster session 2Poster sessions are an opportunity for researchers to showcase their work in Basic and Clinical Sciences to an audience of NF researchers. A panel of judges selects the top posters, and these investigators are invited to present their work in front of the full conference.

Below are the top posters at the 2015 NF Conference in Clinical and Basic Sciences.

Promising Results in Tumor Shrinkage Study Announced at Neurofibromatosis Conference

on Monday, 08 June 2015. Posted in Foundation News & Events, Blog

Over half of patients treated with selumetinib in phase I trial see reduction in plexiform neurofibromas

New York, June 8, 2015 – As hundreds of the world’s leading NF experts convene in Monterey, California for the NF Conference, the largest gathering dedicated to neurofibromatosis (NF), it was announced today that for the first time in the history of the treatment of plexiform neurofibromas (PNs), over 50% of patients saw decreased volume in these inoperable tumors. In a presentation titled “The Promise of MEK: Therapeutics for NF1”, Brigitte C. Widemann, MD, of the National Cancer Institute (NCI), reported that response data in a phase I trial for children and young adults is showing decreases in tumor volume. Anecdotal improvement in function, and reduction in PN related pain and disfigurement has also been observed.

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