Boston, September 29, 2018

The Board of Directors of The OMSLife Foundation presented Boston Children’s Hospital with a three year grant totaling $75,000 for development of an international clinical data registry and biorepository for Opsoclonus Myoclonus Syndrome.  The grant will be provided to Boston Children’s Hospital in three equal increments of $25,000 annually.

This database represents a joint effort between a group of pediatric neurologists and oncologists from Boston Children’s Hospital (US), Evelina London Children’s Hospital (UK), Hôpitaux Universitaires Paris Sud (France), University of Cologne (Germany), and University Children’s Hospital Basel (Switzerland). Boston Children’s Hospital will function as the primary coordinating site for the project, with hopes for expansion throughout both the US and each participating country as this project continues. Through this endeavor, the objective is to compile enough data to significantly accelerate OMS research, allowing clinicians to better diagnose, treat, and monitor patients with OMS.

Mike Michaelis, President of The OMSLife Foundation presented the check to Dr. Mark Gorman at the 2018 OMSLife Caregivers Conference in Babson Park Massachusetts on September 29.

The OMSLife Foundation is a non-profit organization focusing on research and treatment of Opsoclonus Myoclonus Syndrome (OMS).

Update: September 3, 2019

The OMSLife Foundation recently provided the second installment of the three year grant to Dr. Mark Gorman at Boston Children’s Hospital.  Within the past year, things have quickly advanced.  Plans are expanding to locations across additional hospitals in the US and Europe.  OMSLife has also been working with Dr. Gorman and a researcher at Johns Hopkins to begin studies on the samples.

We continue to be pleased with the continued progress on the OMS bioregistry at Boston Childrens Hospital, The Patient Reported Registry developed by OMSLife, and the future research at Johns Hopkins.  We feel these efforts will help in the pursuit of a cure!