Epilepsy Foundation New England Awarded $1.5M from the CDC

Epilepsy Foundation New England Awarded $1.5M from the CDC

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Epilepsy Foundation New England, a non-profit organization serving those living with epilepsy in Massachusetts, Maine, New Hampshire, and Rhode Island, has been selected as a grant recipient of $1.5 million by the CDC’s National Center for Chronic Disease Prevention and Health Promotion. Part of a new 5-year agreement, this grant will allow the Foundation’s continued focus on strengthening the health system to improve epilepsy care; fostering connections between clinical services and community programs; and addressing social determinants of health to improve quality of life for people with epilepsy with the goal of improving their social environment.

The grant will support Epilepsy Foundation New England’s EQOL project, “Improving Quality of Life and Health Equity for People Living with Epilepsy through Multi-Sector Partnerships.” The project will strengthen the health system and improve Quality of Life for people living with epilepsy in MA, ME, NH, and RI. The EQOL project will advance 1:1 Care Management services in Epilepsy Resource Rooms at 11 Epilepsy Centers and 4 nonprofit locations.  Resource Rooms were launched in September 2020; the planned expansion will strengthen EQOL’s ability to identify existing and underutilized resources to address social determinants of health to improve quality of life for people with epilepsy. Quality of life outcomes require targeted action in the ecosystem in which people with epilepsy live, learn, work, play, worship, and age that affect a wide range of health and functioning.

Funding will be used to equip Resource Room Coordinators with Care Management and basic social work skills, Community Health Worker training, and information/referral resources.  Funding will also be used to implement an electronic, multidirectional communication, data collection, and referral system to support clients' physical, behavioral, and social needs in the Resource Rooms.  EQOL will improve the ecosystem for people living with epilepsy by connecting people with EFNE’s social supports and recreational programs, with self-management programs, and with community-based social programs.  EQOL is a multisector partnership with support from people living with epilepsy, every epilepsy center in the EFNE territory, EF of America, multiple community partners and other national organizations.

“This CDC grant will boost the already amazing advocacy work done every day by the EFNE for persons with epilepsy,” said Phillip L. Pearl, M.D., Chairman of the EFNE Professional Advisory Board, Director of Epilepsy and William G. Lennox Chair in the Department of Neurology at Boston Children’s Hospital, and Professor of Neurology at Harvard Medical School.  “The oldest and most established regional center within the Epilepsy Foundation of America, the EFNE is bringing invaluable resources as well as furthering research within the New England epilepsy community.   On a very personal level, my own teenaged daughter volunteered at the summer camps during this pandemic year and has returned so utterly inspired by the generosity of spirit, strong purpose, and accomplishments – large and small – by the EFNE and its devoted staff.”

“I am incredibly proud and excited that The CDC has awarded of a large grant to Epilepsy Foundation New England,” said Andrew J. Cole, M.D., F.R.C.P.(C.), Chairman of the EFNE Board of Directors, Director of MGH Epilepsy Service, Chief - Division of Clinical Neurophysiology, Vice-Chair of the Department of Neurology at Massachusetts General Hospital, and Professor of Neurology at Harvard Medical School. “This award, under the leadership of Susan Linn, Executive Director of the Foundation will allow EFNE to expand and further develop our innovative Epilepsy Resource Rooms, advancing 1:1 Care Management services at 11 Epilepsy Centers in RI, MA, NH and ME. This program is particularly needed by persons with epilepsy who are underserved in our community, but it will have a broad reach to all persons with epilepsy who may benefit from our programs. The CDC grant is tangible recognition of the innovation and programs EFNE has created and pioneered, and it will allow us to build out these programs across our region.  We look forward to collaborating with other recipients of other components of this CDC award to improve the lives of persons with epilepsy and I am particularly proud of our leadership role in this initiative.”

For more information, contact Susan Linn, President/CEO, at @email

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