Seeking Participants: Pain coping study at the NIH

on Monday, 05 October 2015. Posted in Blog

There is a new study at the National Cancer Institute evaluating an intervention to help people cope with chronic pain related to plexiform neurofibroma tumors. The intervention is called Acceptance and Commitment Training, or ACT, and it may helpful for people with NF1 because it can decrease how much pain interferes with people’s daily lives.

It is open to people ages 16 to 34 who have plexiform neurofibroma and have had chronic pain for at least the past three months.

Participants who live more than 50 miles away from Bethesda, MD may receive some reimbursement for travel and expenses. Also, all participants will receive a small monetary gift to thank them for their time each time they complete a set of questionnaires (3 to 4 times total).

Did you participate in Dr. Riccardi’s study in the 80s-90s?

on Friday, 02 October 2015. Posted in Blog

Did you or a family member participate in a study by Dr. Vincent Riccardi (Baylor University, Houston) back in the 1980s-early '90s? New permission is needed for Dr. Riccardi to release these valuable resources for use in current research of families with NF1. If you think that you or a relative participated, Dr. Riccardi would greatly appreciate hearing from you, at or 818-957-3508. New members from these families are welcome to contact him as well.

Thank You Falic Family Foundation & Duty Free Americas

on Thursday, 17 September 2015. Posted in Foundation News & Events, Blog

A note from Foundation President and Chief Scientific Officer, Annette Bakker, PhD:

2015 GOLF EVENT DFA FFF TCTF smAs President of the Children’s Tumor Foundation and on behalf of our Board of Directors and staff , we are enormously grateful to the Falic Family Foundation and Duty Free Americas (DFA) for organizing a spectacular golf and tennis fundraising tournament at the Weston Hills Country Club in South Florida on September 10, which raised $250,000 for the Foundation's Synodos for NF1 initiative. DFA underwrote 100% of the cost of the event, and every dollar raised is also being matched dollar-for-dollar by Jim Bob and Laurée Moffett. This generosity will have tremendous impact on our major collaborative research effort - Synodos, designed, developed and managed by CTF - and will go a long way in helping advance the work we are doing to fight NF.

We are thankful for partners like the Falic Family, DFA, and the Moffett family. Their support encourages us all that one day we can together end NF.

CTF Visits Washington, DC to Meet with Policymakers

on Friday, 11 September 2015. Posted in Foundation News & Events, Blog

IMG 1187 smOn September 8 and 9, the Children’s Tumor Foundation visited key policymakers and appropriators in Washington, DC. One of our primary goals is to advocate for continued federal support for neurofibromatosis research. We are also excited to share that we met with the White House Office of Science and Technology Policy to discuss how CTF is improving the treatment of neurofibromatosis through precision medicine.

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