This unique consortium brings together a multidisciplinary team of scientists from twelve world-class labs at academic and medical centers of excellence, who have pledged to work closely together – sharing information, datasets, results and more – at every step in research development, with the goal of speeding up the drug discovery process.
This group of talented researchers come from varying backgrounds – from basic science, to translational science, to clinicians – and have joined together in order to break down the barriers that have traditionally inhibited collaboration. Synodos represents a move from the traditional trial-and-error efforts of the past, and reflects a desire from all involved to enable the most promising NF research, and to accelerate treatments.
The term synodos comes from the grouping of two ancient Greek words: syn and odos, which when combined mean ‘to work together on the same path’. This spirit of likeminded purposefulness has for the first time brought together NF researchers in an effort modeled after the much-acclaimed ‘Stand Up To Cancer’ initiative. Participants have agreed to work together in a transparent and collaborative manner.
“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,” said Annette Bakker, PhD, President and Chief Scientific Officer of the Children’s Tumor Foundation. “The unique value of this consortium of researchers is its collaborative and multidisciplinary activity, bringing researchers together in a way so as to understand NF2 in all its characteristics and manifestations.”
NF2, or neurofibromatosis type 2, is a genetic disorder that affects one in every 25,000 people and causes tumors to grow on the brain, spine, and nerves, and can result in deafness, facial paralysis, inability to walk without assistance, choking and blindness. NF2 patients experience significant morbidity and mortality related to the disease. NF2 affects all populations equally, and there is not yet a cure.
What Will Synodos Deliver?The Children’s Tumor Foundation has identified the medical issues most faced by NF2 patients, requested proposals from the entire research community, and designed strategies that have a higher probability of finding effective treatments for NF. The Synodos initiative will deliver on this approach with:
A key facet in this initiative is the participation of Sage Bionetworks, a highly-regarded research institute that will:
“The impact that this will have on patients is tremendous. Gone is the wait-and-see mentality where research is done in silos, hidden away, sometimes forever,” said Dr. Bakker. “We all want the same thing – to end NF – and we’re going to work together until we meet this goal. More broadly, this research has implications not just for NF, but for other diseases and conditions as well, including cancer. Synodos is a ‘win-win’ for all involved, and most importantly, a big win for the patient.”
In addition to the partnership with Sage Bionetworks, Synodos brings together the following Centers of Excellence (listed alphabetically by the name of the researcher involved)
The Co-PIs leading this team of researchers are (affiliations listed above): Jaishri Blakeley, MD; Wade Clapp, MD; James Gusella, PhD; and Scott Plotkin, MD, PhD.
Synodos’ Team of External Advisors are:
Synodos’ Founding Supporters, who have generously agreed to support initial funding of this project are:
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