The Matty Fund to Become Part of Epilepsy Foundation New England
Leading RI children and family epilepsy support organization to become The Matty Project, expand services to adults, and develop throughout New England.
Warwick, R.I. – Jan. 30, 2017 – The Matty Fund and Epilepsy Foundation New England (EFNE), today announce their partnership and the unveiling of The Matty Project. The announcement was made at The Matty Fund’s annual winter gala to an attending audience of more than 200 families, friends, supporters, and donors. The event was held on Saturday, Jan. 28, 2017 at the Crowne Plaza Hotel in Warwick.
The Matty Fund will become The Matty Project as an initiative under EFNE. The evolution of the organization will enable the expansion of support and services to Rhode Island adults living with epilepsy, including job skills training, financial support, in-person and digital community platforms, and access to on-staff experts. In addition, the success of The Matty Fund in Rhode Island will be utilized as model for EFNE to develop programming and expand upon its grassroots community building efforts across the New England states.
The Matty Fund was created by Richard and Debra Siravo in 2003 after their five-year-old son, Matty, passed away from a prolonged epileptic seizure. Since its first act of building a handicap-accessible playground at Matty’s preschool, the organization has grown to provide family resources, raise epilepsy awareness, promote patient safety, and improve the quality of life for children and families living with epilepsy.
The Matty Fund’s signature events and programming will continue under EFNE through The Matty Project, including the Camp Matty therapeutic horseback riding program, Matty's Memorial 5k Run/Walk, the Matty Fund annual golf tournament, and the “My Friend Matty” epilepsy awareness book and corresponding Matty Hatty elementary and pre-school program.
EFNE was founded in 1981 as the Epilepsy Association of Greater Boston. Throughout its 30 years, EFNE’s work has followed its mission to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
“It’s a whole new time for EFNE,” said Susan Linn, executive director of the organization. “As we continue to evolve EFNE’s programs and services, our work with The Matty Project will truly enable us to expand upon the reason we are here: help for today and hope for tomorrow. We are so inspired by the Siravo family’s strength and passion; and we are grateful to them as well as the entire Matty Fund staff and community for venturing into these new opportunities with us. Together, we will advance open conversations and provide the critically needed support and resources for those fighting epilepsy throughout New England.”
Richard Siravo led the unveiling of The Matty Project alongside his family and members of the EFNE board and staff during Saturday’s event. Two of Siravo’s sons, Joe and Steve, have been appointed to the EFNE Board of Directors, and his son, Christopher, will serve on the newly forming Rhode Island Epilepsy Council.
“There could not be a more perfect alignment of mission between our two organizations,” said Siravo. “When Deb and I began The Matty Fund nearly 14 years ago, we had no idea of the impact we would have or desperate need for such an organization. It is Matty’s spirit that has been guiding us through every step along this amazing journey and his magic encouraging us to grow. The Matty Project is the next phase in our journey. We are so excited to be working with EFNE to positively impact the lives of children, adults, and families living with epilepsy.”
Epilepsy awareness and lectures, college scholarships for students living with epilepsy, and research funding for epilepsy treatments and cures are shared programs that will continue under EFNE. EFNE’s affiliation with its parent organization, the national Epilepsy Foundation, strengthens the unified voice of advocacy for epilepsy programming and policy on regional and nationwide levels.
Upcoming EFNE events during the first half of 2017 include:
- March 4 – Masquerade Candlelight Dinner (NH)
- April 17 – 20 – Camp Matty (RI)
- April 22 – Walk For Epilepsy Orono (ME)
- April 29 – Springfield Walk for Epilepsy (MA)
- May 6 – Epilepsy Education Conference (NH)
- May 13 – 5k Color Run/Walk For Epilepsy (ME)
- May 27 – Matty 5k Run/Walk (RI)
For more information about EFNE or programs and resources, visit www.epilepsynewengland.org.
About The Matty Fund
The Matty Fund was established in 2003 after 5-year-old Matthew Siravo passed away from a prolonged epileptic seizure. The non-profit organization is dedicated to honoring young Matty while improving the quality of life for other children and families living with epilepsy. Since that time, The Matty Fund has grown to become the foremost epilepsy support organization providing family resources, public awareness, and promotion of patient safety across Rhode Island and nearby states. The Matty Fund is a Rite Aid KidCents Charity. Connect with us on Facebook, Twitter, Instagram, and at http://mattyfund.org.
About Epilepsy Foundation New England (EFNE)
Epilepsy Foundation New England brings communities together to raise awareness about epilepsy, help people with epilepsy, and support research. In the U.S., 1 in 26 people develop epilepsy in their lifetime. There are 3 Million people in the US with epilepsy (more than the number of individuals with autism, cerebral palsy, multiple sclerosis, and Parkinson’s disease combined). For more than three decades, EFNE has been leading the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. If you or someone you know is living with epilepsy and would like more information about programs and services in your area, please contact Epilepsy Foundation New England at (617) 506-6041 or www.epilepsynewengland.org.