Grace For A Cure

"When you change the way you look at things...
     the things you look at change"

"I have learned, through this experience, that the greatest challenges in life can also bring the most incredible blessings.  I find ways to offset the "bad" with mega doses of good and find true comfort in the healing power of love..." 
-Joan Bellontine, Grace's Mom

June 30, 2010

The Long Island Press, "Fortune 52" (Article by Beverly Fortune)

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.   At this time, there’s no course of treatment for SFS. Symptoms  include 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.  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.

From watching teachers work in her home, Joan discovered that only a certain type of behavioral methods would work to motivate Grace to complete different tasks. With Grace as her inspiration and Joan's older daughter, Julia as her "consultant," 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, J. Grace Corporation 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 home town - South Huntington, was her first customer. Now with more than 12,000 “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 great awareness for this disease and raise money for a cure.”

Besides the fundraisers she’s hosted and the games she’s sold to benefit MPS research, this story is about what Joan has received in return since she began educating Long Islanders about MPS 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, Or you can call her at 516 456-7575 
October 17, 2009
Well, we had another successful fundraiser!!  This year was our BEST yet!  We had over 350 people and the weather was PERFECT!  OUTBACK STEAKHOUSE was cooking up a storm, POPSICLE PUSHERS ice-cream supplied delicious treats for everyone and free OTIS SPUNKMEYER COOKIES were baking for us all!  EVAN AND DEBBIE GREENBERG of MY GYM IN HUNTINGTON STA. came and brought lots of fun activities (even though it was a holiday for them!!!).  Soda and water were donated by PEPSI (thanks TO ANTHONY!) and VINNY RIZZOTTI'S amazing reggae band played for free thanks to VINNY!  ANTHONY'S SPECIAL FRIEND AND UPS EMPLOYEE LEO CUMMINGS SAVED THE DAY BY INTERCEPTING OUR T-SHIRTS THAT WERE MISTAKENLY GOING TO BE DELIVERED ON MONDAY (AFTER THE EVENT!)!!!  Our shirts arrived at our doorstep at 1:30 am the morning of the event - LEO you are INCREDIBLE.  We received great deals from AARDVARK AMUSEMENTS and LA SPADA RESTAURANT keeping our kids bouncing and playing and supplying everyone with delicious pasta!  As always XEROX gave us $500, thanks to Carol G. for that one.  URBAN COFFEE located in Greenlawn supplied the coffee and supplies for FREE.  We had a patriotic BLAST latenight thanks to C.H.!!  A good friend of John's Mark S. made his annual appearance the day before and helped us with everything before and after the event!!  Thank you for that Mark!!  THE ROWLEY AND SAVASTA FAMILIES were a gigantic help and we couldn't have pulled it off without them!!  Thank you so much -kind and dear cousins.  HEATHER AND MICHAEL TANELLA raised a FORTUNE on-line before the event even took place.  SUSAN AND JOHN CULLEN'S fundraising help was priceless as well!!  Thanks to our great friends and family who helped like LAURIE - GRACE'S WONDERFUL TEACHER, JILL M., CHRYSOULA, GARY, KATHY AND KEVIN O.., KAREN, JAMIE, KERRY, TRISH, KELLY O, TOMMY P, ALICE THE AMAZING WAITRESS AND HER SUPER-DUPER FRIEND, FIOS TV, TV55, GO STREALY,BESITO RESTAURANT, SOCCER MAGIC, PLANET FITNESS, ANTHONY DEFRANCO SALON, PANERA BREAD, APPLEBEES, ESTATE JEWELERS, MICHELE DIBONO, THE LONG ISLAND DUCKS, SILVIA, CHRISTINE STANTON, DONNA BACH - CHIRO EAST MEADOW, THERESA WUKICH CHIRO ELWOOD, JOANNE NATOLE-MASSAGE THERAPIST HUNTINGTON LI, THAD MARSH, BODY AND SOUL YOGA-HUNTINGTON, HEATHER TANELLA AND BARRY MALTESE FOR THEIR PHOTOGRAPHY, DEBBIE KELLER AND FAMILY, JOHN JURIK'S BLESSINGS and so much MORE.   
But mostly we need to thank JENN FURBER AND SUE TSAI for not only their incredible and necessary help (could NEVER have done it without them) - but for their BEAUTIFUL HEARTS AND TALENT. 
We raised over $17,000 towards a cure.  Next year our goal is to SIGNIFICANTLY grow that number.  We need a committee of about 25 people to pull it off.  We can raise $50,000 - 100,000 or more if we have more help so we are asking for your support.  If anyone would like to be on our committee please e-mail us at this website.  It would involve coming to a few meetings (maybe 6-8 throughout the whole year) and taking on a task or two.  A helping heart can accomplish a great deal!  Thanks for everything!!!  Peace, Love, and GRACE to you all. 



September 1, 2009
Well, the event is only 3 weeks away!  Lots of people are signing up and donating!!  We are going to have such a great time this year!  We have our neighbor Vinny Rizzotti's band playing - they are really great!  And we have a wonderful Beatles cover band called the "Mop Tops."  You may have seen them at the South Huntington Public Library.  We have lots of fun things for kids - facepainting, spin art, miniature golf, gigantic bouncy castle/slide, and much more.  There is going to be a huge SURPRISE for kids after dark and lots of great raffles.  This year we are raffling a children's scooter, a gigantic big screen tv, event tickets and more.  Outback Steak house will be here BBQ'ing some delicious food and we will have "lotsa" pasta.  Soon I'll be putting a video on the site from last year - just to show a little of the fun that is had at our events!!

June 20, 2009
We are planning our 4th annual Grace for a Cure event.  This one will be on September 19th.  Last year was a tough time for me because my Mom got sick in September, a couple of weeks before the event and then unfortunately passed away in January.  This year we decided that we will not do a 5K walk/run.  We are just going to have a big party instead.  I am busy working on "Grace Your School" a project that gets games/programs out to children in our communities via their school districts.  These games help children with their well-being such as eating right, exercising caring for the planet, etc.  There are also games for curriculum such as math, reading and writing.  All of the games will have the Grace For a Cure Logo so it is my vision that most of the refrigerators in the country will someday have us displayed prominently as they reach for there morning milk or juice.  It's all about awareness!!!  I left my job at Xerox and created J. Grace Corporation.  I took a yoga teacher certification as well, I could never have gotten through this without yoga!!   Julia has had a great year at school - she got honorable mention in the Huntington Youth Writes contest for her story "My Special Sister Grace."  She was chosen over 1,300 other entries!  I will put it on the site so you can read it if you would like.  Julia also wrote a really cute little children's book called "My Life as a Snowman."  I am currently having it illustrated it and will sell it when we get it all done - hopefully in time for the holidays!  Grace continues to shine like the sun!  She is lots of fun to live with.  She is always running around laughing at everything - she is so content and enjoys so many things.  Her teacher Kathy and her one-on-one assistant Trish have been AMAZING this year.  We really "stepped in it" (in a good way) when we got into this class!!  The entire team that works with Grace is just incredible.  As always we are thankful for Grace's wonderful home team as well.  Laurie, Krista, Liz, Cathy, Lisa and Linda.  You guys are our angels and we would be lost without you!!  Best of luck to Cathy who will be having surgery - come back soon!!!!

April 15, 2009
This weekend we will be at IONA college for a special fundraiser for Grace for a Cure.  Grace's very special friend/helper Jenn introduced us to a great girl we call KRAKI (she helped us with Grace this summer)  She spread the word on Grace up at her college and we a while back we had a "Meet Grace" day.  I spoke to the students in the speech and hearing club and also to Kraki's sorority, Delta Theta Beta.  They were so nice and now they are having a special walk to raise funds towards a cure!!
The event is from 9am to 12pm at Iona College (NY).  A very hearfelt and special thanks goes out to Maria L. for organizing and planning this event for the speech and hearing club!  And THANKS to all of the Delta Theta Beta who will be involved as well!!  Thanks also for the yummy chocolate covered strawberries you sent us for Valentines Day!!   


June, 2009