Synodos for Schwannomatosis

on Wednesday, 04 May 2016. Posted in Foundation News & Events, Blog



New York, NY, May 4, 2016.  The Children’s Tumor Foundation is proud to launch a new consortium for schwannomatosis, the rarest and least studied form of neurofibromatosis. Based on the Synodos model for NF1 and NF2, the ‘Synodos for Schwannomatosis’ is a multi-tiered project that will bring together basic, translational, and clinical researchers towards the end goal of developing effective treatments for schwannomatosis.

Schwannomatosis patients not only develop multiple benign schwannomas but also suffer from severely debilitating pain. In fact, morbidity due to intractable pain, which often persists after tumor resection, is the main challenge for schwannomatosis patients and caregivers. Incomplete understanding of the molecular basis of the disease together with the absence of well-characterized preclinical tools such as cell lines and animal models have been the main roadblocks for therapeutic advancements. Therefore, the Synodos for Schwannomatosis will initially fund studies that are focused on either i) discovering therapeutic targets for pain from an extensive ‘omics’ characterization of uniformly annotated schwannomas or ii) developing cell lines and animal models that faithfully recapitulate schwannomatosis. The consortium will be funded for two years with a total budget of $1.0 million. The use of the International Schwannomatosis Database and the creation of a network of international collaborations are highly encouraged.


For more details about the specifications of Synodos for Schwannomatosis and the application process, please click here.

Please feel free to address any questions to

We look forward to your participation in this exciting endeavor!


Tristan Vierra - Featured NF Hero for May 2016

on Wednesday, 04 May 2016. Posted in Foundation News & Events, Blog

Tristan Vierra NF Hero "Tristan was diagnosed at age two with spontaneous NF1. He is now five. He has hundreds of cafe au lait spots, Lisch nodules, and freckling. He does not appear to have any further complications at this point, but we visit his genetics specialist at the University of California San Francisco (UCSF) once per year and an ophthalmologist quarterly.

 "Tristan loves to play board games, baseball, basketball, and ping pong. He also likes riding his bike and hanging out with his older brother, Chance. In school, he enjoys reading and math and he's great at both! His favorite food is pizza, his favorite TV shows are "Quiz Time", "Leap Frog", and "Team Umizoomi", his favorite movie is "WALL-E" and his favorite book this week is Snow Babies by Laura Ellen Anderson.

Resources to Shine a Light on NF in 2016

on Monday, 01 February 2016. Posted in Blog

Shine a Light Social GraphicShine a Light on NF is a grassroots initiative that brings NF awareness into the community by lighting up buildings, bridges and monuments in blue and green.

In 2015, you went into your community and secured 40 landmarks across the country and around the world! Places like Niagara Falls, the Seattle Great Wheel and the Zakim Bridge all glowed blue and green on May 17th!

For NF Awareness Month 2016, we've created tools to make outreach even easier. Download the flyer and the graphic, and shine a light on NF in your community!

Michelle Stolaruk - Featured NF Champion for May 2016

on Wednesday, 04 May 2016. Posted in Foundation News & Events, Blog

Michelle Stolaruk NF Champion  "My name is Michelle, I am 27 years young, and I live with neurofibromatosis type 1. I was officially diagnosed at the age of 19, after my primary care doctor referred me to The University of Michigan Genetics Center, because she noticed the rapid development of café au lait spots on my body and knew that my mother has NF1.

"I was born and raised in Ann Arbor, Michigan where I lived with my parents and two brothers. When I was 12, my family moved to Jackson, MI. In my six years there, I played basketball, volleyball, softball, and ran track. It wasn’t until the summer before my junior year of high school that I began to experience major problems related to NF.


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