That brings me to our Christmas wish from last year… I am thinking I can talk about it now on JOA since it has been granted, installed and functioning!!! Last year on Majic 105.7 John Owen posted his “Holiday Wish” as the commercial said… “grant your wish on …..” It was pretty simple, he wished for an elevator in our home so he could share our entire house with us. Well, we did not hear back from the radio station…… but God certainly heard us!
And they DID IT!
This photo of Joe and Owen was taken in August during the construction as Joe handed Owen 'the check'. I really have not allowed myself to wrap my brain around this… finally starting now and each time I do…. I cry pure tears of JOY. It is unreal as to what our Community has done for our son, what our school family has done for our son and what our family has done for our son…. It is like Christmas every day as Owen rides up and down between floors……So if you are reading this and you were part of LIFT THEM UP - please send your family photo our way so we can see your beautiful faces every day we Lift him up!!!
THANK YOU THANK YOU !!!!! Check out his first ride~
Elsa just starting her marathon bug and Irene ending her Marathon career of 25 yrs. Please visit Marathon runners to learn about these awesome moms that keep our Moving Spirit alive and used all their might to Derail Duchenne…
They are also our newest Heroes... please check all our Heroes out also!
We are so excited about Country Stove, Patio & Spa’s Chili Cook off on 10/27/12. Gloria Federico and her staff have dedicated their first cook off to JOA and want to help us Derail Duchenne! Click here to read more and sign up (scroll to middle). Tony and I will be competing in the cook off and we encourage you to come out and support us! 12 to 3 pm on Saturday 10/27 – what a great way to spend a Fall day! Thank you so much Gloria for your support.
Local or not – you can participate in this cool fundraiser! Our friend Alicia Brown is a Scentsy and Grace Adale consultant and has opened her on line store to JOA! You guys out there – shop here for your sweeties for Christmas….. right – easy peasy! Ladies please check out these great sites, you will find gifts for everyone and something special for yourself! 100% of the profits will go to JOA! Thank you Alicia! Click it... Scentsy Grace Adele
I love this picture… it is Owen’s Healthy Heart..beating!!!!! We visited OSU last month to discuss a heart study and the result was this beautiful image of his perfect heart! We also got to meet a very cool team of doctors at OSU that are working diligently to keep this heart and all Duchenne hearts beautiful through cardiac research.
For a donation of $20 or more, he will put a little LEGO person in the OSU stadium in your name (that is Owen in the front row at the Horseshoe). The goal is to fill the stadium…. Yep that means tons of needed $ for our precious little hearts...Please donate to Heart/Muscular Degenerative Diseases Research Fund (313809) click here for the link.
We are thrilled to welcome Jennifer Briese, Ashley Gay and Amy Schultz as JOA Board members, please check them out on our JOA Board page. We are honored to have their service.
Eteplirsen is derailing Duchenne
Just out last week was the news about Sarepta Therapeutics (bioresearch firm) 48 week human trial results for a drug designed to ‘skip’ exons and the results were extremely encouraging! What does all this mean? This company (and one other, GSK) have been working diligently to develop a drug to slow the progression of this muscle killer, this study has shown through 12 boys that the drug is working!
Although it is fantastic news, the actual FDA approval and getting that drug into our Duchenne boys that can benefit (13% of our DMD boys, Owen included) will take some time, of course time that none of our guys have. We have been watching this drug for five years (since Owen was diagnosed) and have waited painfully long to see it finally get into boys in the U.S. and get these result.
So pray for speed, pray that the FDA doesn’t hold this up, and pray that if this is to be, then let it be and let it be RIGHT NOW! We are very excited but also not counting on this to be the answer…. Not yet anyway.
Wow… so much in this update because as you know this train is never stopping until we derail this darn thing!
Owen of course is loving his elevator and doing very well in school. His heart update was a great relief and every day we are thrilled to pieces that we have our beautiful three boys to cherish….
So go on now, shut this off and go give the ones you love a great big hug!!
We will catch up again soon until then ~much love
Tony, Jen, Rutger, John Owen and Wade xoxox