BAY RIDGE — Craig Eaton has been a civic leader in Bay Ridge for decades. He was born and raised in the borough where he and his wife Susan reside with their three children, daughter Danielle and sons Christopher and Vincent. The former Republican Party chair is a longtime civic activist, serving in numerous community organizations.
Eaton, who was the former chair of Community Board 10, has won numerous awards for his service and currently is the chair of the board of the HeartShare Autism School. But for over a decade now, he has been trying to raise awareness about a little-known disease that hit too close to home.
“Funtasia 2019 Research Banquet” is a biannual event that was held on Sunday, Sept. 8 at the El Caribe Country Club in Mill Basin. The Eaton family hosted the fundraiser to help raise awareness and funding for a rare bone disease their son Vincent was born with in 1994. He was diagnosed at seven months old with Multiple Hereditary Exostosis (MHE), a disease that affects only one in 50,000 people.
In 2005, the Eaton family, together with the Ziegler family, founded the MHE Research Foundation, a non-profit organization. To date, MHE — a diagnosis in which dozens of tumors develop on a child’s bones, causing severe pain, limitation of movement, shortening of the limbs and other complications — can only be remedied by surgery to remove the tumors, and try and lessen pain.
To date, Vincent has undergone over 36 surgeries to remove over 60 tumors — some of them the size of a baseball — and a chondrosarcoma (bone cancer) all by the age of 24. However, through it all, Vincent has pursued his dream of being a physician, and is currently studying at Creighton School of Medicine in Omaha, Nebraska. He hopes one day to treat patients facing the same struggle and help make their lives better.
This year marked the eighth “Funtasia” fundraiser, an afternoon of recognition and celebration that Susan Eaton lauded as an event that left everyone feeling like they are truly “part of the magic of giving and part of finding the cure!”
There to accept an award in recognition of his hard work in caring for patients with MHE was Dr. David Feldman of the Paley Institute in West Palm Beach, Florida, who was joined by his family.
The Eaton family were proud to announce that, after 12 years of hard work, fundraising and continued research, the MHE Foundation, researchers and Ipsen/Clementia Pharmaceutical are in the beginning-mid stages of a drug trial for Palovarotene, which they hope will result in a better treatment that could potentially represent a cure.
“This is truly a major step and very promising for future generations of children whose families have MHE,” said Susan, thanking all of those who have supported the foundation. “It is our hope and joy for children with MHE to lead a better quality of life and enjoy their childhood. It is only through the support of our wonderful family and friends that believe in us and support our mission.”
“The clinical research being conducted is a dream come true for me and others suffering with MHE,” said Vincent, who, by sharing his story, has created a legacy for what his father calls an “orphan disease.”
Seven other families struggling with MHE joined the Eatons at this year’s event. Many of them were overwhelmed to meet other people dealing with their same disease.
Also attending the fundraiser was Brooklyn Borough President Eric Adams and Community Board 10 District Manager Josephine Beckmann.
“Our foundation is a grassroots organization and MHE is an ‘orphan disease’ due to lack of knowledge of it among the general public,” said Craig. “There are no national spokesmen, actors, actresses or sports celebrities aiding us to find a cure.”
The MHE Foundation’s success (and this exciting first step towards long-term treatment), Susan stressed, “is just the beginning for Vincent — and countless others.”
For more information, visit www.mherf.org.