For the past two years, our family has hosted a Coach to Cure MD
tailgate party at the Winking Lizard to raise awareness for Duchenne muscular
dystrophy. This year, we teamed up with area schools to help spread this
grassroots effort to other families, coaches and players in hopes of coming
together as one team in this fight to find a cure.
On Saturday Sept. 24th national coverage and
awareness of Duchenne occurred at over 500 football games all across the
country. This year PPMD exceeded one
million dollars in funds raised from Coach to Cure MD grassroots events
nationwide!
Our family hosted a Coach to Cure MD event during the Holy Name High
School game on Sat. Oct 1st and the John Carroll University game on Sat.
Oct 15th. The weather was not
cooperative with both below average temperatures and wind advisories! However, not only did both teams bring home a
victory, we all came together to tackle Duchenne. Special thanks to Coach Pinzone at Holy Name and Coach Scafe at JCU!
Thank
you to everyone who helped contribute more than $7,500 to fund critical
Duchenne research!
We are continually inspired by the strength of
our family and friends in our community. We realize that we can't do it alone
and, with you on our team, we don't have to.
Thank
you for your constant support and loving prayers.
Check out
some local coverage in the John Carroll University Website
So many leprechauns are busy selling shamrocks for RJ and all of "Jerry's Kids!" We will reach the Pot of Gold at the end of the rainbow! Thank you to the following schools and businesses for taking part in the 2011 Shamrock Challenge on behalf of the Sullivan family and MDA of Northeast Ohio. Over $9,000 was raised and will be put into the hands of scientists who are working more then ever before to find a treatment and cure for muscular dystrophy.
St. Bernadette School St. Helen School St. Joseph School
Ichiban Salon & Day Spa Great Lakes Brewing Co. Westlake Rec Center
Mrs. Doyle's 1st Grade Class at St. Helen
Jim and RJ flexing their muscles at the Lube Stop in Westlake St. Joe's 7th grade Girl Scout Troop #602
St. Bernadette Student Council LeprechaunsMake a Muscle....Make a Difference
January 2011
The St. Bernadette school community has opened their hearts once again for two very special young boys. During the winter sports rally last week, RJ and Michael were given special seats as the student body welcomed and honored 10 former St. Bernadette alumni who are part of the St. Ed’s football team. The Eagles had a record breaking undefeated season and went on to win the Division I State Title Championship Game this past December for the first time in the school’s history! RJ and Michael received championship tee shirts and signed St. Ed's banners. RJ has his St. Ed’s banner proudly hanging up in his bedroom, even though his Dad was a Wildcat!
During the rally the football players helped kick off the “Faces of Hope” campaign which beautifully captures the spirit of these two boys, who may be going through different medical journeys, but are bonded with the same hope for a better, healthier tomorrow.
In March shamrocks will once again be sold at St. Bernadette’s with all proceeds benefitting MDA's mission to find a treatment and cure for MD! Then in April, a “Kick it for Cancer” kickball event involving the entire student body will occur with proceeds benefiting Pediatric Cancer research. Michael Orbany is in first grade at St. Bernadette’s and underwent brain surgery in October, recently finished 30 days of radiation treatments and is about to start chemotherapy. Our prayers continually go out to Michael and his family during their unbelievable journey.
Our heartfelt appreciation to Mrs. Noga, Mrs. Menear, and all student council members for their hard work in organizing an afternoon of celebration for our victorious alumni and introducing the Faces of Hope campaign for RJ and Michael. We feel truly blessed to be part of such a caring school community.
Faces of Hope (West Life photo by Larry Bennet)
Check out the local coverage of St. Bernadette's rally by the West Shore Sun newspaper!
Our heartfelt thanks to our generous family and friends who over the last two years have helped Rally4RJ raise almost $50,000 toward MD research under the banners of Parent Project Muscular Dystrophy and the Muscular Dystrophy Association.
Momentum in the research arena is changing for Duchenne Muscular Dystrophy. Today, on www.clinicaltrials.gov (enter Duchenne Muscular Dystrophy in the search box) there are 50 studies listed. Only ten years ago, the number was three. While we wish there was even more studies and human trials we feel like the Duchenne community is learning, growing, and making progress towards finding a treatment and cure.
October 10, 2010
Congratulations Julie and Nicole!
The Chicago Marathon is a spectacular, fun event. A record forty thousand runners from all 50 states and more than 100 countries wound their way around 29 Chicago neighborhoods cheered on by 1.5 million spectators. Of that number, 10,000 ran for charitable causes including the 90 runners who ran for Parent Project Muscular Dystrophy.
We stayed with our good friend Jodie Laughlin who lives one house away from the 9.3 mile point of the race. She hosts a marathon party each year and over 50 people came to Rally 4 RJ and all the runners.
Julie and Nicole surpassed their fundraising goal and Rally 4 RJ has contributed over $14,000 (and counting - not too late to donate to the marathon) to fund critical DMD research. Additionally, PPMD exceeded their goal with $166,000 raised at the Chicago Marathon!
Once again we want you to know how appreciative we are of your loving support and continued prayers for RJ.
We have hope, we have love, and we have such great support. We will find a cure!
September 25, 2010
We would like to thank all who attended and gave so generously at our 2nd Annual Coach to Cure MD Football Fundraiser to Benefit Parent Project Muscular Dystrophy on September 25th. Special thanks to Jim Elliott at the Winking Lizard Tavern in Lakewood for donating the room and bowling lane rental and all his support of our cause and efforts the night of the event. Thanks also to all the companies and families who donated items for the Chinese Raffle baskets. We hope everyone enjoyed their chance at almost 40 raffle baskets this year. Please support the companies who donated to our event…
Sheila Bee Designs, Custom jewelry by Lori Paximadis,
Embellish, Bella Capelli Sanctuario, Knuth’s,
Studio South Photography, Love & Laughter Card & Gift,
Malley’s Chocolates, Artist for a Day,
Fairview Lanes, Bay Lanes, Buckeye Lanes, Caribou Coffee,
Mojo’s, Nicky Nicole, Cookies by Design, Friendly’s,
Mitchell’s, Learning Express, Mallard Creek Golf Club,
Pine Hills Golf Club, Sweetbriar Golf & Pro Shop,
Live Fit Personal Training, Sweet Basil,
Residence Inn of Westlake,
Sweet Melissa, St. Ignatius High School
On September 25th, PPMD raised over $270,000 from Coach to Cure grassroots events all around the country. Over 500 colleges and high schools participated and 8,700 coaches wore patches declaring their support for Coach to Cure MD.
Thank you for being a part of our team! We have to admit that sometimes it is easy to think how can our small party (in the whole scheme of things) make a real difference? But it wasn’t just our event it was all the events around the country on September 25th that collectively made a difference and helped raise awareness to this devastating genetic disorder. We should all feel good that we got involved and are trying to affect change.
No one can do everything, but everyone can do something.
What is Coach to Cure MD?
Coach to Cure MD is a partnership between the American Football Coaches Association (AFCA), a professional organization for over 10,000 college football coaches and staff, and Parent Project Muscular Dystrophy, the largest national charity devoted exclusively to Duchenne Muscular Dystrophy. In 2008 the AFCA adopted PPMD’s Coach to Cure MD program as one of its charity efforts. One reason the AFCA was drawn to Coach to Cure MD was because of the unique parallels between Duchenne, a disorder which robs young men of precious muscle strength, and college football, a game where young men are at the peak of their muscle strength.
The goals of Coach to Cure MD are simple: raise national awareness of the disorder and raise money to fund research for a cure. One football Saturday each season (this year September 25, 2010) AFCA coaches nationwide agree to promote Coach to Cure MD by wearing armbands, mentioning Coach to Cure MD during on – and off-field interviews, and in some instances doing even more extensive media relations around the date.
July 2010
We feel extremely blessed to have two very special people joining the Parent Project Muscular Dystrophy Run for Our Sons team at the Bank of America Chicago Marathon, scheduled for October 10th. They are running on behalf of RJ. The Run for Our Sons team is a group of families and friends who proudly run the 26.2 miles to help raise funds and awareness for Duchenne Muscular Dystrophy.
My sister Julie continues her love of running and is fueled by a personal mission: helping RJ. Her 10 years of Marathon running have taken her to New York City, San Francisco, San Diego, Portland, Cleveland, Eugene, and Alaska. When asked how many marathons, half marathons, triathlons, and relay-team races she has run, Julie says she has stopped counting. God Bless her healthy feet! Thank you, Julie.
My friend (and hairdresser at Bella Capelli) Nicole continues her recent addiction to marathons and triathlons by running her first Chicago Marathon for RJ. RJ is her buddy at Bella Capelli. Let’s just say that RJ does not make it easy for Nicole since he has never been fond of the hair-cutting experience—only the treat afterwards! Thank goodness Nicole is patient and understands boys. We are extremely touched that Nicole is part of the PPMD team. Thank you, Nicole.
Julie and Nicole, we will think of you both during your endless training this summer. We are grateful for your time, effort, commitment, and love. Your passion for running will make a difference for RJ and all boys whose lives have been altered by DMD. Together we can end Duchenne! Please visit Julie and Nicole’s personal fundraising pagesto donate online.
The Sullivans helped judge the Chick-Fil-A Iron Chef Cook Off at the Westgate Chick-Fil-A restaurant. Fire fighters from Fairview Park and Rocky River participated in the event to help raise money for MDA. All the food was delicious, but after the votes were counted, the Panini-style sandwiches prepared by the Fairview Park firefighters secured their first-place trophy win. The winners were also the proud recipients of a new grill, which was generously donated by Lowe’s (of Rocky River).
Thanks to Dan Curran at Chick-Fil-A for hosting the event, George Kraus from the Rocky River Fire Department, JD Weinberg from the Fairview Fire Department, Jen Demaline from Lowe’s, Kenny Crumpton from Fox 8, and Mayor Eileen Patton of Fairview Park for taking the time to support the efforts of MDA. As a family that is the recipient of many services provided by MDA, we thank you for caring!
April 2010
During the month of March friends were very busy selling shamrocks!! Our heartfelt thanks go out to the following schools and businesses that took part in the Shamrock Challenge on behalf of the Sullivan family.
St. Bernadette School St. Helen School Madison High School Bella Capelli Sanctuario Westlake Rec Center
Special thanks to the following individuals for your time, energy, and commitment to helping raise awareness and funds as part of MDA’s quest to find a cure!
Mrs. Nancy Noga, Mrs. Karen Casey, Mrs. Noreen Hollo, Vincent Hwang, and Izzie Lyons (St. Bernadette School)
Christine Taylor (St. Helen School)
Alex Gregory (Madison High School)
Sandy Borrelli and Serina Peck (Bella Capelli Sanctuario)
Rachel O’Malley and Angela Zavagno (Westlake Rec Center)
In total, the five shamrock challenge locations raised almost $11,000 to benefit muscular dystrophy research.
Bella Capelli Sanctuario St. Bernadette School
St. Helen School St. Bernadette School
Enjoy the slide show from St. Bernadette School where hard work, determination and the luck of the Irish helped the Student Council exceed their impressive goal and raise $7,862. As RJ would currently say…that would buy a lot of Lego’s!!!
March 2010
The Shamrock Challenge sponsored by the Muscular Dystrophy Association (MDA) takes place the first three weeks of March. You may notice shamrocks being sold at area businesses including Applebee’s, Lowes, Donatos, Drug Mart,Lube Stop, Mr. Hero and Bella Capelli Sanctuario. Please support these businesses as they are committed to helping MDA's fight to find a cure.
At RJ's school, the St. Bernadette School Student Council is sponsoring "Shamrocks to Fight Muscular Dystrophy" by selling Green Shamrocks for $1 and Gold Shamrocks for $5. Student Council is working hard to help raise awareness and research funds. Additionally, on March 20th and 21st shamrocks will be sold after masses. All contributions from the fundraiser will benefit MDA. MDA is a non-profit organization that helps families living with neuromuscular diseases overcome challenges, reach goals and find a cure! It is truly wonderful how the St. Bernadette School has embraced RJ.
On February 25th, RJ woke up to a picture of himself on the front page of our local paper, the West Shore Sun. Shannon proclaimed that RJ was famous and then told him to hurry up so they wouldn't be late for school. So off RJ went to school with a smile on his face for his day of being famous! See the link below for the complete article on St. Bernadette School and RJ.
Thank you to everyone who voted on Facebook for PPMD during the Chase Community Giving Program.PPMD won $25,000 in round one of the contest and made it to round two as one of the top 100 charities. While PPMD did not win the one million dollar grand prize, the Duchenne community felt like winners!Two Duchenne specific organizations, PPMD and Darius Goes West made a major impact on this contest and on Facebook using the world's largest social media network to tell their stories, raise awareness, and educate people about this disease.
RJ's Aunt Julie dedicated her 26.2 mile run in the ING New York City marathon in support of RJ. What a beautiful day in NYC forAunt Julie to run in the most prestigious marathon in the country! She was honored to be part of 50 runners on the Run for Our Sons team sponsored by Parent Project Muscular Dystrophy. Collectively, the team raised approximately $300,000 for DMD.
With her sprained ankle securely wrapped and barely recovered from a cold she had the previous week, Julie got up at 6:00am to take the ferry to Staten Island to be among 40,000 runners waiting for their scheduled start time. She was in the second wave which meant waiting until 10:00am to begin her marathon run. Julie later told us that she could not lie, “I had to dig deep to keep on going!” RJ’s name was written in pen on her hand as a constant reminder. As we stood watching a continuous stream of runners from all around the world be part of such an extraordinary race, I was saddened to think that RJ will never be able to run a marathon. It wasn’t long after that we saw two women taking turns pushing a young girl in a wheelchair; they were all partaking in the marathon! All things are possible. The glass is still half full.
Please visit her website and support her in any way you can. We love you Aunt Julie!
October 16, 2009
Rally4RJ teamed up with the Holy Name High School football team to defeat DMD. Under the guidance of Rebecca and Danny Dreher, the team spread the Coach to Cure MD word at their Oct. 16th game against Notre Dame-Cathedral Latin. While the team did not bring home a victory for their school, they were all winners in conquering DMD. It was an unseasonably cold and rainy night at Brooklyn Stadium in Parma Heights, Ohio but spirits were high at the Coach to Cure MD tent. A bake sale, face painting, and raffle basket keep friends busy as they worked hard to raise money for DMD. Next year we will have hot chocolate to ward off the cold! Everyone can make a difference in the fight against DMD and on Oct. 16th high school students Rebecca, Danny and friends proved just that. The game is always on so we must continue to Rally4RJ and be ready to defeat Duchenne Muscular Dystrophy.
Septemer 26, 2009
We hosted our first annual football fundraiser for family and friends. The fundraiser took place Saturday Sept 26th at the Winking Lizard in Lakewood, Ohio from 5-10p.m. All proceeds benefited Coach To Cure MD.
Coach To Cure MD is a partnership between the American Football Coaches Association (AFCA), a professional organization for over 10,000 college football coaches and staff, and Parent Project Muscular Dystrophy (PPMD). In 2008 the AFCA adopted PPMD’s Coach To Cure MD program as one of their charity efforts. One reason the AFCA was drawn to Coach To Cure MD was because of the unique parallels between Duchenne, a disorder which robs young men of precious muscle strength and college football, a game where young men are at the peak of their muscle strength.
The goals of Coach To Cure MD are simple: raise national awareness of the disorder and raise money to fund research for a cure. On one football Saturday of each season, AFCA coaches nationwide agree to promote Coach To Cure MD by wearing armbands and mentioning Coach To Cure MD during on and off-field interviews.
We were overwhelmed at our first fundraiser with the feeling of love and support. Thank you to everyone who attended the event and/or made a donation to make it so successful. We hope everyone had a good time. The night belonged to the bowlers and their quest to bowl nonstop! Food was barely a deterrent for the kids. RJ’s two Grandmother’s who were unknowingly put in charge of watching the kids bowl quickly needed reinforcements! Thank goodness all the kids went home with 10 fingers and 10 toes. We raised $4,650 for PPMD and their tireless efforts to find a cure. Please continue to pray for a cure.
August 22, 2009
Our family and friends participated in the Muscular Dystrophy Association Stride & Ride, “A Walk on the Wild Side” at Crocker Park in Westlake, Ohio. The one-mile victory walk and family cookout helped raise awareness and funds to provide families with medical care and fund research for neuromuscular diseases. Thank you to everyone who came to support RJ and our family!
August 2009
We visited the local fire station to thank the firefighters for their
support during the Fill-the-Boot campaign for MDA. Like clockwork,
our tour ended and a call was dispatched for a paramedic truck.
We watched as the paramedic truck drove out of the station with
Our Support
St. Helen School 
For Julie's
