I said he was right. He then said, “If I were in a room full of people, I’d leave.”
I love this statement so much, in that if you know Owen you know how so true this is. He tries his best to avoid unfamiliar people and situations. But once he feels comfortable, he is literally the life of the party. Which I guess is so ironic in this statement.
Help us maintain this balance, right?
In joining our family centered efforts.
2014 is no different ~ we got it going on in hopes that when Owen see’s you in the room full of people, he stays!
There is much going on with our Walking / Running Team. Our official training for the CLE Rite Aid kicks off 1.31.14. Anyone can join, you don’t have to be a pro, just gotta have the desire to make your life better through fitness with your working legs. It is super easy, sign up at (click the blue) Moving Spirit. We meet weekly for team walks / runs and give weekly nutrition tips along the way. There is an optional fundraising element to the team and know that each step you take not only improves you but gives Owen a chance to keep rolling.
derail Duchenne. This is in honor
of John Farinelli and Joe Vasil who are running 100 miles IN A ROW for John Owen on August 2 in the 100 Mile Burning River Run. If they can run it in 30 hours, you can certainly do this in seven months! Join us by signing up at 100 Mile Miracle Run
(PS If you are running the Rite Aid you will log 100 miles between now and May ... so why not merge your efforts?)
Join us for our Play for JOA!
Royalton Fieldhouse 10701 Royalton Rd North Royalton, OH 44133
Let’s celebrate a Saturday afternoon and derail Duchenne Muscular Dystrophy as we just have fun in a dodgeball tournament - $5 entry fee Prizes for winners of each level
Age Group: 4 and under ~3:00 pm to 3:30 pm
Age Group: 5 – 6 ~ 3:00 pm to 3:30 pm
Age Group: 7 – 9 ~ 3:30 pm to 4:00 pm
Age Group: 10 – 12 ~ 4:00 pm to 4:30 pm
Age Group: 13 – 16 ~4:30 pm to 5:00 pm
Age Group: 17 + ~ 5:00 pm to 5:30 pm
All Play ~ 5:30 pm to 7:00 pm
Each player must sign up individually via www.joainc.org click EVENTS select Play for JOA Secure your registration by paying on line when you register or send your check
5715 Bunker Road
North Royalton, Ohio 44133
Responsible adult must be present during event for all children under 18
Contact: Amy Schultz 440 230-9486
Visit Play for JOA
We are very excited about On Base for Duchenne.
Impact Team Sports and the Impact Lumberjacks travel baseball organization are coming together to help derail Duchenne for good by spreading awareness of Owen's disease and raising money to help in the research effort to find a cure. The new awareness program is called "On Base for Duchenne" and was created in partnership with JOA.
Coach Franks, Impact Team Sports V.P. and Director of Baseball Operations, is asking baseball players and parents to seek sponsors at all monetary levels to join in and help the cause. After each of the team's games, the player who reached base the most times (via hit or walk) will be named the “On Base for Duchenne” Player of the Game. At the end of the season, the total number of bases will be added for the players and our sponsors will write a check for all the bases earned. In essence, the players will raise awareness of Duchenne and money to find a cure with their play on the field during the season!
Any league is welcome to Get on Base with us to Derail Duchenne! We are very grateful for Coach Franks and the Lumberjacks for helping to spread awareness and derail. Check out more detail
7.19.14 Picnic in the Park
We are gearing up for a great Picnic in the Park! Victory Highway will entertain us and we will have the usual awesome summer night planned for you. We welcome product donations big and small for the raffle. We are in need of kids prizes for the games. Any help you can give to us is absolutely welcome!
Plan on Golfing with us on 8.4.14 and our Iron Horse Bike Ride 9.14.14
It seems the fun just never ends here at JOA, Get on Board to help us derail this beast, 2014 is the year YOU derail Duchenne
Every second of each day goes by so fast, but we are so fortunate to recognize the value in that second with each of our boys. I think we will leave you with these stolen pictures of our boys… and “Stealing Owen” written shortly after the New Year. (I included photos of all our boys because after all fatal illness or not - all & all time just steals all our kiddos)… We so hope to see you soon…..
I know exactly what my sister was doing when she took this picture of Owen. She was trying to ‘steal’ him. I do it all the time. I do it to all the boys, hers too, Grab that moment in time when they don’t know you are capturing them on film.
No, but this one was different. She was stealing him. Funny, we had the great camera capper this Christmas, we have the same camera and hers and mine got mixed up so I downloaded this….. her thievery … I will take it any time, mind you.
Simply, Duchenne is stealing him. Just like this snapshot, completely random. That is Duchenne. Little bits at a time, just as fervent as my sister is in trying to capture his amazing presence without him knowing… here and there…now to the arms as he sneaks the double handed fork to the mouth so perhaps we don’t see at the dinner table trying like heck to eat like all of us…. The thief in front of us….stealing….
It is so amazing how this soon (very soon) to be 10 year old child has more courage than I when it comes to this robber. He continues to amaze us as his slow motion efforts with the heart of a champion tries so hard to roll himself from side to side in PT or gets the arms up as we stretch or as he simply tries like hell to bend down and pick up the lego himself instead of asking for help.
Yes, the thief is clearly there and we are going to do our best to stop him from Stealing Owen. Trying like mad not to let my broken heart leak ….
Trying to stop this thief….
That is all there is to it.