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‘Dream Team’ of Multidisciplinary Scientists Team Up in Unique NF Research Consortium

The Children’s Tumor Foundation brings together interdisciplinary team of
neurofibromatosis experts for first Synodos for NF1 meeting

NEW YORK (January 20, 2016) – On January 21, 2016, a group of world-class scientists and clinicians from various disciplines, together with leading patient advocates, will gather in Minneapolis, Minnesota for the inaugural Synodos for NF1 meeting. NF1 is one manifestation of neurofibromatosis, a genetic disorder that can cause tumors to grow on nerves throughout the body. NF1 affects one in 3,000 people and there is currently no effective treatment or cure.

Synodos for NF1 is a unique consortium that brings together a multidisciplinary team of scientists, clinicians, technicians, patients and other experts from world-class labs at academic and medical centers. These scientists have pledged to work together and share unpublished information, datasets, and results, thereby accelerating the drug development process.

Three separate consortia make up Synodos for NF1; this model is based on the first Synodos collaboration that launched in 2014, which focused on NF2, another manifestation of neurofibromatosis.

Two groups of researchers will form the Clinical Acceleration component and focus on the development of a swine model; the teams share the goal of accelerating the path to a cure, but will use different technology and target different genetics to mimic NF1.

A third group of researchers will tackle low grade gliomas (LGG) and work to more fully understand the pathway of these complex tumors. This team will gather in Philadelphia in February.

“Synodos researchers are committed to finding solutions to the unique problems that affect NF patients in the fastest, most efficient manner,” said Annette Bakker, PhD, Children’s Tumor Foundation President and Chief Scientific Officer. “The unique value of this consortium of investigators is its collaborative and multidisciplinary activity, bringing researchers together in a way so as to understand neurofibromatosis in all its characteristics and manifestations. CTF is committed to supporting the construction of new research models that allow a rapid translation from basic science to clinical benefit.”

The Synodos for NF1 investigators are:

PreClinical Acceleration – Project 1
Co-leader David Meyerholz, DVM, PhD | University of Iowa
Co-leader Jill Weimer, PhD | Sanford School of Medicine
Christopher Rogers, PhD | CSO of Exemplar Genetics
Jessica Sieren, PhD | University of Iowa
Dawn Quelle, PhD | University of Iowa
Benjamin Darbro, MD, PhD | University of Iowa
Adam Dupuy, PhD | University of Iowa

PreClinical Acceleration – Project 2
Co-leader David Largaespada, PhD | University of Minnesota
Co-leader Christopher Moertel, MD | University of Minnesota
Gunda Georg, PhD | University of Minnesota
Mark Kirstein, OD | University of Minnesota
Nancy Ratner, PhD | Cincinnati Children’s Hospital Medical Center
Brigitte Widemann, MD | National Cancer Institute
Eva Dombi, MD | National Cancer Institute
Adrienne Watson, PhD | Recombinetics, Inc.

Low Grade Glioma
Co-leader David Gutmann, MD, PhD | Washington University in St. Louis
Co-leader Michael Fisher MD, PhD | Children’s Hospital of Philadelphia
Stephan M. Pfister, MD | German Cancer Research Center, DKFZ and Heidelberg University Hospital
David T. Jones, PhD | German Cancer Research Center, DKFZ and Heidelberg University Hospital
Olaf Witt, MD | German Cancer Research Center, DKFZ and Heidelberg University Hospital
William A. Weiss, MD, PhD | University of California San Francisco
Joanna Phillips, MD, PhD | University of California San Francisco
Adam C. Resnick, PhD | Children’s Hospital of Philadelphia
Angela J. Waanders, MD | Children’s Hospital of Philadelphia

Synodos for NF1 is lead funded by Jim Bob and Laurée Moffett through a generous $2.5 million matching fund. A real-time data sharing platform was developed in partnership with Sage Bionetworks.

The Children’s Tumor Foundation is also leading a Synodos for NF2 consortia and has plans to initiate a similar research project dedicated to schwannomatosis. For more information about Synodos and the Children’s Tumor Foundation, please visit

About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF can cause tumors to grow on nerves throughout the body and may lead to deafness, blindness, learning disabilities, bone abnormalities, disfigurement, cancer, and disabling pain. NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefitting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit


Simon Vukelj, VP, Communications, (212) 344-7568,
Rebecca Silver, Public Relations Manager, (646) 738-8563,