So, the FDA has officially committed to working with Sarepta or at least backing the efforts of Sarepta and their exon skipping drug Eteplirsen. To refresh your memory, two years ago we started the letter writing campaign to the FDA to back this drug as it is one that shows complete promise and proof that our boys can benefit. The First time the FDA gave the nod, we rejoiced
So, here we are in May 2014, with the recent news that the FDA again has given their support with talk of going to market 2015….
You can see why I am skeptical.
The ‘good news’ is – by the end of the year Sarepta will initiate a safety study of this drug for children that are no longer walking, yes that is Owen. Originally, they were ONLY going to test on ambulatory (walking) boys. (This is the same study Owen would have been involved in had he still been walking on his eight birthday.) Through the amazing voices of some incredible moms that I know you have seen on Facebook and in the media, they were able to get this study also ‘agreed to’ as a legitimate study. We will do what we can to sign up for the study….. so….
Wow, talk about hope dangling like a carrot in front of Tony and I. So hard to grab that carrot because it has ‘been there before.’ But even reading this sentence above, makes my heart stop and my eyes well with tears in the possibility that we can change his life.
And simply, none of this could have been possible without you. From the start of our diagnosis, the support, the love, the prayers, from the $1.00 raised by selling lemonade or the thousands raised by running miles, to the voices raised and heard. None could be done without you. So maybe that is why this is so hard, because come October and if there is no study, simply I feel as if we let you down, we let us down, we will let him down……. So prayers that will not happen.
Picnic in the Park 7.19.14
Once again we will bring thousands of souls together for one great night of family fun and entertainment to German Central in Parma, Ohio.
Several new bands this year will keep you on your feet dancing; Victory Highway, Natalie Kulka, Three Pews Down and our original favorites, The Polka Pirates. We are changing up the menu this year with Mama Mias Foods providing sausage sandwiches (100% proceeds to JOA), DQ (also 100% to JOA), our amazingly Famous Dave’s and Fire Truck Pizza Company.
We got the fun and games covered with basket raffles, 7-11, kids and adult games.
We would love to accept your donation of any size to be included in a raffle basket or if you have a theme basket in mind, we will take it! Please let us know by July 1 how you can help us.
Download this poster (click on it) and this pledge card and share with your boss and workmates! As always, the success of this picnic comes from you, our amazing supporters!!!
As you know the Impact Team Sports Lumberjacks are raising awareness and funds every time they get on base this summer during their 11U Travel Team adventure! We are so grateful for their dedication to making each hit about Duchenne and literally hitting it out of the park. These ballplayers earn pledges per base they earn and each game a Duchenne Player of the Game is recognized, so far we want to congratulate these great players:
Duchenne Players of the Game:
KC Storm- Miller, Lobianco, Labanc, Kidd, Hammer
Stallions Blue- Binger
Cyclones- Binger, Labanc, Lobianco, Sheddy
N. Ridgeville- Kidd, Miller, Morgan
Bat Cage- Labanc, Morgan
Premier- Binger, Labanc, Morgan, Lobianco
Rocky River- Carocci, Lobianco
Fairview- Binger, Carocci
Stallions Blue- Binger, Hammer
Miners- Binger, Cora
Stallions White- Cora
Coach Franks shared his joy with this program, “Just that I am very proud of the amount of money raised and more importantly the awareness that the entire team has raised. The banner goes up every game. I had two parent groups ask tonight at the facility about how they could donate...”
It is an amazing blessing to have these young men going to bat for Owen. Go Lumberjacks!
It is amazing how the spirit of one can light so many. We have the framed Elevator Pledge still proudly displayed in our kitchen. I get to look at it every day and recall the thousands of blessings one spirit created for our family. It is that spirit again that keeps strong as, Joe Vasil, once again does amazing things to help our son, like none other.
Except this time he is not alone! Joe Vasil and John Farinelli will run 100 miles in a row at the Burning River 100 on August 2, 2014. One spirit, one light, one very long path. Please share their journey through prayer and pocket by visiting their site. Their goal, $10,000 and to still be able to walk after the race…. We plan on setting a support schedule, so stay tuned!
It is so hard to believe that even more can come out of JOA, yet is has! We are excited to bring our first Golf Tourney to you on Monday, August 4, 2014. For all you bosses out there, treat your hard workers to a foursome and a day in the sun for this great cause. Those that can join us please do it is at the beautiful Windmill Lakes Golf Course shotgun start at 11 am. Please visit the amazing site that Becky and Tom Hudach (our hosts) put together for this very special even!
The weekend of May 18 was amazing! We had 55 soles running for our sweet soul mate, John Owen at the Cleveland Rite Aid! Saturday we did the 5k with many first time runners and what a great time I had running with Rutger for the first time, he did amazing!
What a great time we had at our JOA 5k/10k Camo Run 5.3.14 ~ 168 participants what a blessing!
John Owen said he will take part of the race next year - so start training now if you plan to beat him - he is very fast in his wheelchair!
Congratulations to our Top Finishers: 5k - Alex Stopar 18:22 and Elise Chojnacki 21:45 10k - Greg Strnad 44:22 and Karen Keaton 48:46
Thank you to our awesome Volunteers - we could not have done it without you! John Owen is so lucky to have your dedication in his life as are all our boys that struggle daily to do simple things like brush their teeth - THANK YOU from the BOTTOM of our heart!
Mary Ellen, Rachel & Morgan Dailey
Deb, Simon, Emily & Sophia Factora
Jenny & Rich Kern & Family
Elsa & Grace Kilbane
Crystal & Miranda Millner
Ray & Barb Muniak
Brandi & Rania Rucinski
Trinity High School
DARICE - Ryan Kilbane
Jack Pearcy - Rockin it out on our Driveway
Just before Sunrise Maria Biel Photographer
Romano’s Farmer’s Market
Rossi and Romano - Rockin it at the Finish line
Kim’s School of Dance
BullDog JakZ – Empire Health & Fitness
Aunt Rosie Kraska
Mrs. Janice Massey And give it up for North Royalton Police Department!
The boys are doing well. Everyday Owen loses strength but you can’t see it because his spirits are so high and simply all of us are very Happy. Joy ~ right ~ that has to be what this journey is about ~ if it does not bring you Joy then it is not worth doing. All of them are clearly joyous.
Please join us this summer at our events, we’d love to see you, actually we need to see you for that catch up, hello and hug that we have missed…. but please most of all, don’t forget your Joy…. Carry it with you always!!!