Skip to main content
Premium Trial:

Request an Annual Quote

Synodos Initiative Formed to Battle Neurofibromatosis

NEW YORK (GenomeWeb News) – The Children's Tumor Foundation today announced a new research collaboration aimed at finding cures for neurofibromatosis type 2 (NF2).

Modeled after the Stand up to Cancer initiative, Synodos brings together researchers from 12 laboratories at academic and medical centers of excellence who will share information, datasets, and results, among other things, in order to accelerate the pace of new drug discovery.

Mark and Tracy Galloway as well as the Keller Research Fund provided initial funding for the initiative. A spokesperson for CTF said in an e-mail that Synodos is an ongoing initiative and the initial funding is for $3 million.

NF2 is a genetic disorder that affects one in every 25,000 people. It causes tumors to grow on the brain, spine, and nerves, possibly resulting in deafness, facial paralysis, inability to walk without help, choking, and blindness, CTF said. No cure currently exists.

CTF said that it has identified the medical issues that NF2 patients face, requested proposals from researchers, and designed strategies in order to find effective treatments.
Synodos aims to carry out the goals of CTF by using new, advanced cell and animal models to hasten drug screening; and by using real-time data sharing developed in partnership with Sage Bionetworks.

CTF added that Sage will "ensure that data and knowledge are quickly disseminated" to consortium members as it is produced. The research institute also will create an online publicly accessible record of the consortium's research, "allowing others to freely use the generated data for new purposes."

Synodos also will use new target pathways; increase the understanding of response and resistance to treatment; identify effective combination therapies; develop new clinical trials for NF2; and report annual milestones.

"Synodos brings together the brightest minds in the NF field, and beyond, in order to design strategies and execute research in a manner free of bureaucratic obstacles," Annette Bakker, CTF President and CSO, said in a statement. "More broadly, this research has implications not just for NF, but for other diseases and conditions as well, including cancer."

The co-PIs on Synodos are Jaishri Blakely, associate professor of neurology, oncology, and neurosurgery at Johns Hopkins University and director of the Johns Hopkins Comprehensive Neurofibromatosis Center; Wade Clapp, professor and chair of pediatrics at Indiana University School of Medicine; James Gusella, professor of neurogenetics, Massachusetts General Hospital and Harvard Medical School; and Scott Plotkin, associate professor of neurology at Massachusetts General Hospital and Harvard Medical School.