Spreading Awareness
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February 2017
Take a look at local coverage of the hefty price tag being considered for Marathon's Emflaza drug in the U.S. On February 9th, the FDA approved a steroid that will give Duchenne patients widespread access to the drug and ensure its quality and purity. This is all good news since we previously obtained the drug overseas and out-of-pocket, and often worried that the overseas supply would not be guaranteed. However, the initial price tag is alarming! News 5 Cleveland article |
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February 2015
Three Trackers of Ohio helps RJ hit the slopes. Check out the local coverage in the YouTube video and the Nordonia Hills News Leader. Thank you Three Trackers of Ohio and Heidi for an awesome afternoon on the slopes! 
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March 2012
MDA's popular Shamrocks fundraising program celebrates its 30th anniversary this year. Take a look at a recent article published in MDA's monthly Quest magazine about the national Shamrock program and our family involvement (scroll to pages 44-45). |
October 2011
Check out some local coverage of Coach to Cure MD on the John Carroll University Website. Go Blue Streaks!
Check out some local coverage of Coach to Cure MD on the John Carroll University Website. Go Blue Streaks!
West Life photo by Larry Bennet
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 12 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.
Check out the local coverage of St. Bernadette's student rally by the West Shore Sun newspaper!
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 12 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.
Check out the local coverage of St. Bernadette's student rally by the West Shore Sun newspaper!
September 2010
Thank you MDA and Dave Armstrong at The CW channel (WBNX) for creating a profile of our family that was shown to viewers of the local Jerry Lewis MDA Labor Day Telethon. Although we may not have a future as actors, we were happy to share some of the wonderful experiences we have encountered with MDA.
RJ laughs every time he sees himself in the video and still wonders why all the footage of him playing his favorite activity, Lego’s hit the floor of the editing room (along with the puzzled look we got trying to explain an editing room). Shannon on the other hand, wonders why she wasn’t shown more in the video (i.e. the great shot she made playing basketball in the driveway). Well, I guess we shoudn't have worried about them being camera shy.
For those who are curious, Cleveland raised just over $900,000 throughout the year and during the telethon that was included in the national total for MDA. Maybe next year MDA of Cleveland can reach one million dollars – it just sounds like an awesome amount for all the kids! To put it into perspective $900,000 is currently 234 hours of research dollars.
Thank you MDA and Dave Armstrong at The CW channel (WBNX) for creating a profile of our family that was shown to viewers of the local Jerry Lewis MDA Labor Day Telethon. Although we may not have a future as actors, we were happy to share some of the wonderful experiences we have encountered with MDA.
RJ laughs every time he sees himself in the video and still wonders why all the footage of him playing his favorite activity, Lego’s hit the floor of the editing room (along with the puzzled look we got trying to explain an editing room). Shannon on the other hand, wonders why she wasn’t shown more in the video (i.e. the great shot she made playing basketball in the driveway). Well, I guess we shoudn't have worried about them being camera shy.
For those who are curious, Cleveland raised just over $900,000 throughout the year and during the telethon that was included in the national total for MDA. Maybe next year MDA of Cleveland can reach one million dollars – it just sounds like an awesome amount for all the kids! To put it into perspective $900,000 is currently 234 hours of research dollars.
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. RJ went off to school with a smile on his face for his day of being famous!
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. RJ went off to school with a smile on his face for his day of being famous!
January 2010
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.
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.