On her first foray into Long Island networking, Joan Bellontine, founder of J. Grace Corporation and Grace for a Cure, made a very strong impression. The next day I received three nominations from people asking me to feature her in my column as a Fortune 52. After you read her story, I’m sure you’ll share their appreciation of her work.
When Joan’s youngest daughter, Grace, was 4½ years old, she was diagnosed with Sanfilippo Syndrome (SFS) or MPS IIIB, after previously being misdiagnosed several times. Because she is missing an enzyme that would normally break down sugars and cells in her body, Grace suffers from myriad health problems. At this time, there’s no course of treatment for SFS. Symptoms can include blindness, mental retardation, seizures and nerve damage that slowly worsens until the patient eventually requires a wheelchair.
“They say that Grace will live to be 15 or 20, but there have been kids who live to their 30’s,” Joan says hopefully. “Grace has more problems than other kids with SFS,” Joan explains. “She’s already having seizures. It’s a very sad disease. My daughter has zero ability to communicate. She’s never said the word ‘Mommy.’ ”
Like every mother I’ve met faced with this kind of challenge, Joan has the heart of a lion and a will of steel. “I try to put everything in perspective, and I always felt like I was the most blessed person,” Joan says. “Then when I got Grace’s diagnosis, I was like, ‘What did I do? How did this happen?,’ After a while I started to think maybe there was a reason, and everything I am is because this was supposed to be.”
Joan wanted to create more awareness of this relatively rare disease while raising as much money as she could to fund further research. “I wanted to do something to make myself whole,” she explains. She founded Grace for a Cure as a non profit and began hosting fundraisers with the proceeds donated to different research organizations.
Right on the heels of Grace’s diagnosis, Joan was dealt another blow when her mother developed Alzheimer’s, which has recently been found to be closely related to SFS. In fact, scientific research suggests that new Alzheimer’s drugs may be useful in treating SFS. This hopeful news gave Joan an even greater urgency to find a way to raise more funds for research.
Joan and her older daughter, Julia, 11, discovered that certain games were a great way to motivate Grace to complete different tasks. With Grace as her inspiration, Joan conceived of a series of educational games and home/school collaborative programs based on ABA teaching (Applied Behavioral Analysis) that Grace’s therapists use, involving repetition and integrative multi-sensory teaching techniques that culminate in rewards. “These games are a visual guide with a goal in mind. You take daily steps and treat yourself kind. It’s like a whole metaphor for life,” she says.
Joan founded her company, Grace Your School, to sell these games to support school programs while enhancing children’s self esteem and awareness of their diet, physical activities, social skills and their environment. Her hometown, South Huntington, was her first customer. Now with more than 8,000 “I Can Do It With Grace” games being used in neighboring school districts, she says proudly, “It’s starting to turn into a real business. If I get this to go national, I feel like it will create so much awareness for this disease and raise money for a cure.”
Besides the fundraisers she’s hosted and the games she’s sold to benefit SFS research, this story is about what Joan has received in return since she began educating Long Islanders about SFS at various events. “When you have a daughter like Grace,” Joan says with a smile, “so many amazing people come into your life.”
For more information go to www.GraceYourSchool.com or www.GraceCures.org, email Joan at joan@gracecures.org or call 631-629-4844.
If you know a super woman who deserves good Fortune—and a profile—e-mail your nominations to Beverly at bfortune@longislandpress.com.
