Grace For A Cure

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

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. 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            

November 26, 2010
I received this e-mail recently I just have to share it:
hello my name is chelsie I am 12 yrs. old and i lost my little brother in 2007 due to sanfilippo syndrome he was 9 yrs old when he passed we had the best medical care for him  the doctors told us that he had 9 to 15 yrs to live.in the last 6 months we had him on hospice they took great care of him he also had a feeding toub.he was fed pediasure though the feeding toub .he loved to play with other kids and would eat any thing.he also loved to flirt with other girls.my mother and I wish you great luck on finding a cure.


We have been communicating a bit back and forth and now Chelsie and Julia have become texting buddies. It's great for them to be able to support one another.  Then a few days ago, I received this one:
hi its chelsie again just checking in to see how everyone has been any luck on the cure yet??hows grace??

I'd say this kind of stuff is pretty darn MOTIVATING!!!  MAKES ME WISH I COULD FIND A CURE TODAY (LIKE AS IN, RIGHT THIS SECOND!!)!!!    ....Joan

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

February 12, 2008



Grace is 7 years old now. She still loves television and food. We now have a full-time babysitter for Grace, her name is Jenn. Jenn is like a big sister to Grace, and takes great care of her (she's actually helped us for over a year now). She feeds her, plays with her, and takes her for walks, giving Joan and I a break to spend more time with Julia and each other. Jenn is a great with Gracie's hair as well, she gives her fancy hair styles all time - picking out great outfits for her, making her look really cute. THANK YOU JENN !!!

Because of the oral fixation that comes with Grace's disease, she constantly puts her hands in her mouth. This is not a good thing, at first we didn't realize it was a problem until she developed sores between her fingers. She would also chew them until they bled. Grace now wears medical wraps that go from forearm to bicep keeping her arms mostly straight, making it very uncomfortable for her to keep her hands near her mouth. They work great and she seemingly doesn't even realize they are there.

Another struggle has been Grace's sleep pattern. Sanfilippo Syndrome causes her to be wide awake in the middle of the night at times, we now have an aide that comes every night from 11pm to 7am to keep an eye on her at all times making sure she is safe - good thing I have great medical benefits at work.

We are changing Grace's school again. Sanfilippo is very rare and leaves kids in a rare place school-wise. Most of the schools in our area accommodate autism and less aggressive forms of special needs.  Grace is very social, happy, playful, etc - but can't really learn things that kids ages 4-12 with basic special needs can learn. For instance, she was in a class recently were they were teaching the kids to bake brownies - or if ever on fire, to drop and roll. Grace could ever understand things like that, I'm sure she ate the brownies though. Joan has been doing a great job at working on the whole school hunt for Grace over the years and making moves as needed.

I discovered a way to steal kisses from Grace (since she doesn't know what a kiss is or how to do it). I put a broken cookie on the edge of my lips, her arm braces restrict her from grabbing it so she comes in with her lips and pulls it away. Hey, it's the best I can do... Next I need to invent something for a hug. It hurts to have never been hugged by Grace, although Julia makes up for it with our "super hugs".

- Dad

May 14, 2007

Well, we are a few years into this thing now, Grace is 6. She is a happy girl. She still loves television - Power Puff Girls, Little people, Elmo and Pooh. She still LOVES to eat, and will eat almost anything. She has been healthier as well, less ear infections and colds this past year. Obviously no cure yet, but we keep praying.

- Mom and Dad

December 23, 2005

I updated the site myself for the first time! My website master Martin, (Sarah's husband - you can read more about Martin and Sarah on the boards) is away on military assignment and has had no internet access (hence the break in updates to the site). After a few instructional emails, and a long conversation with Martin (who's in Alaska) I am now able to update it! On the boards the other day I described a Grace Kiss - I think I will add it as today's update;

A Grace kiss needs to be defined at this point, there is a whole process to it. It starts by saying "Gracieee, gimme a kiss - Gracieeeeeeee.., gimme a kiss". Then ya get down on one knee. She looks up at you knowing what you want, but is reluctant to do so a little (for the record Joan gets millions of more kisses than me). Then she either runs away (no kiss), or leans into you with her mouth sort of open with drool coming out and lays one on you making a sound. Now, it's not really a kiss because she doesn't have the motor skills to pucker and really kiss. However it's her way of kissing - and that means a lot. They are wet and slobbery and germy, but it's worth it.

I almost got one this morning, but she ran off. When she runs off, I chase her down and kiss her on the top of her head.

- Dad

August 15, 2005

Grace has a cute little circle that she makes outside. She goes out the back door on the deck, over the bridge (we have a little bridge that goes over a koi pond) takes a right, then comes up the other side of the deck and around again. She does it many times in a row and likes it. She also loves the pool, when Julia jumps in she gets excited and screams. She likes putting her feet in the water, then getting in and out over and over again. She also loves turning the pages of books a lot lately.

- Dad

June 20, 2005

Grace actually goes into her bed and goes to sleep on her own now. It's is very funny - at this point she doesn't know very much and can't speak, so when she gets tired off she goes. The house gets unusually quiet, we run off to her room to find her snoring away. Yesterday was Father's Day and the girls made me some great gifts at school that I am thankful for - really cute stuff. Grace is getting big, closing in on four feet tall. She's getting really heavy too, she has pretty much graduated from regular diapers found in stores in perfect time. The county now provides extra large diapers going forward - yay!

- Dad

May 20, 2005

Last Sunday Grace graduated from her crib to a nice little toddler bed. We were a little nervous about it, the crib was like a little home for her and change is not always welcome with Grace. Well, she loves it. At bedtime she runs over and climbs right in and stays there all night, sitting up in the morning and waiting for us to get her. She is so darn cute. Grace is a big girl and lifting her in and out of that crib was getting tough. Thank God for the smooth transition.

- Dad

May 3, 2005

Grace has been really cute lately. Her new thing is running up to you while you' re doing something else, and leaning towards you looking directly into your eyes. She will continue staring at your eyes until you make eye contact with her. Once you make eye contact she becomes satisfied, smiles and goes back to watching television or whatever it was she was doing before coming over.

- Dad

April 27, 2005

The winter season is over and Grace is feeling great these days, the ear infection is gone! She's been extra happy and laughs really hard when we jump off the couch in her direction. We are in the process of looking for a good school for Grace for this Fall, she will be five in November. There are several nice schools in the area that can help her. The family is at Woodloch Pines this week relaxing and enjoying some time away. Julia and Grace are playing with their cousins, there is a huge indoor pool that they love.

A bunch of people have asked us how Julia is dealing with Grace's situation - so we'll add it here. Julia is Graces' six year old sister not affected by the disorder. As it stands right now, Julia knows that Grace has a "disease" which to her means a cold that won't go away. Before we got the diagnosis, we thought that Grace may speak some day, now we are pretty sure she won't. Julia used to pray that Grace would talk and would hope for it often. We recently told her that the doctor's say she will not talk, and she accepts it. I just asked her what she thinks about her sister being different. She said, I'm not happy about it because I want someone to talk to. A truthful answer.

Overall, we are determined to keep this a happy house...Julia and Grace are given equal attention. Julia has no idea of the extent of what the future brings, and we see no reason to tell her. Some day we will, but that is a long time away. We will seek counseling on this issue. It is true that Grace can't speak, makes funny sounds and has a quirky way of running around, but these are the exact things that make her who she is. Grace's actions bring this family a tremendous amount of joy, laughs and a unique kind of peace that can't really be explained.

We believe that Julia is a better person because of Grace. So filled with love and compassion. And that's a beautiful thing.