“There is something you must always remember: You are Braver than you believe, Stronger than you seem, and Smarter than you think. But the most important thing is, even if we’re apart….. I’ll always be with you.” Christopher Robin to Winnie the Pooh.
Its 2015 and I think it will need to be the year of ‘Be Brave, Be stronger than you seem’ as we continue to wait for the breakthrough that we have been chasing. We are feeling so close that perhaps we can participate in the trial at Nationwide that will bring the drug we have all been praying for, Eteplirsen, into Owen’s weakening body. Word is, since November, that they are on track to start the study, but still nothing definite as of today. But like we said, I think we will need to be brave and be stronger.
This video of Anthony reminds me so much of being Brave and more so of what his mother says, none of us go through this lifetime unscathed. But the hero is there and with grace and courage rides the storm. ANTHONY'S ADVENTURE
I know we got this and we will be brave as we wait for the cue of that miracle
As with all our events, volunteers, product donations and sponsors are always welcome! Please contact firstname.lastname@example.org to share your treasures with us as we Derail Duchenne!
Play for JOA ! Dodgeball~ 03.28.15
Dodgeball March 28, 2015 2 pm to 5 pm Royalton Fieldhouse 10701 Royalton Rd North Royalton, OH 44133
ON BASE FOR DUCHENNE ~ April 2015
Join the Impact Team Sports Group with your baseball team and step on base for Duchenne! Each base these ball players get in their 2015 season raises dollars for research. Contact email@example.com to get your team on base.
Moving Spirit Rite Aid Cleveland Marathon ~ recruiting all levels of walkers / runners to join our team as we race as a team in the Cleveland Rite Aid (5k, 10k, ½ marathon and full) on May 17.
JOA Camo 5k / 10k Run – 5.30.2015 Our 5k / 10k Camo Run is scheduled for May 30 as we rock out North Royalton in this chip timed race! Medals for finishers and walkers for the 5 k welcome!
Picnic in the Park ~ 7.11.15
Our big event is back! Picnic in the Park on July 11 (NOTE DATE CHANGE). Join this awesome family centered event as we celebrate a beautiful summer night at German Central with great food ~Fire Truck Pizza~ , great music ~ Victory Highway ~ and great people. Mark your calendars now for you don’t want to miss this event!
When ordering your Bridgestone tickets, use JOA as your charity and we will receive a portion of the sales!
Play for JOA *Golf Tournament ~ August 5, 2015 Windmill Lakes Golf Club ~~ Becky and Tom Hudach are at it again to bring us an amazing day of Golf at the World Class Windmill Golf Club. Save your date now as details will follow for this great day of golf!
Iron Horse Ride - Cycle in September ~ 9.13.15
Our Iron Horse Bike Ride is an awesome family centered Sunday afternoon as we enjoy the beauty of the Cleveland Metroparks. Save your date for the last event of 2015!
Amazon ~ Don’t forget to connect your amazon account with John Owen’s Adventure, Inc as your charity on Amazon Smiles. JOA receives a portion of your sales!! Thank you
They are growing up way to fast. With Owen turning 11 and Rutger turning 13 in May, it is insane as to how fast they grew up. We decided that Wade will have to be 8 for the rest of his life because we can’t bear to have another one reach double digits….
Rutger and Owen have been enjoying a lot of hunting time with Tony. Sitting in the deer blind most weekends, they have done lots of bonding and laughing. The three of them were able to go on a youth deer hunt in KY back in October. What a blessing it was as the Valley View Hunt Club selected Owen as their Wildlife for Childlife 2014 recipient. The all expenses paid weekend was a memory they will each keep.
Wade is our wrestler this winter and is doing a great job teaching the younger wrestlers on the right moves. He makes his First Communion this year and we are so excited for him! What a great time to be a kid! They are all doing so well in school, I’m telling you these are the golden years and we so don’t want them to grow up….. ever!
It is amazing how much our JOA supporters constantly give to us. Recently, our friend Holly Pearcy stopped by to drop off her babysitting earnings. She wanted so desperately to give to JOA and this was her perfect way of doing so! The North Royalton 6-7 year old Flag Football Champions, the Bengals, instead of buying trophies this year, donated their trophy money to JOA. It seems that the hearts and pockets of our community are simply huge!
It is through these simple acts of giving that we are able to contribute to Duchenne Research that will one day breakthrough for all the brave boys and be that miracle they are all listening for. Our dollars from our Picnic in the Park funded PPMD’s efforts for Dr. Shubha Raman at the OSU Wexner Medical Center. It is these breakthroughs of hope, promise and being able to perhaps hear these boy’s hearts beat strong a little longer that keeps us going.
Heart Drugs Offer New Hope to Slow Cardiac Damage in Muscular Dystrophy -
See more at: OSU Heart
Way to Go Bucks! #1 in the Nation and #1 supporters of Jacob Jarvis, he is 14 with Duchenne. You have got to check this out – it will make your heart soar as you read about the love these boys have for their wheelchair bound teammate.
ESPN Bucks Jarvis Family
So I am paraphrasing Bill O’Riley, his message tonight for our outlook in 2015 is to be honest with yourself. Take a deep look inside and judge who you are and where you are going this year, again I am paraphrasing.
But this thought has kept me up, as I was lying in bed trying to digest what that means to a Duchenne mom, “honesty.”
The rich smell of the wood stove drew me out of my warm bed, I turned on the newly strung outdoor Christmas Tree Lights (long story but we haven’t had a snowy view all Christmas so I had to string them on January 4). I checked on the fire, which was roaring like a snoring dog, hot blasts on and off (which actually kinda scared me). So I adjusted the fire, made some tea and here I am again in front of you, pouring out my deepest thoughts in the darkness of a cold winter’s night.
Bill nailed it today as he told me to cut it out and start being honest with myself. Part of me wants so desperately to buy into his plan. “Oh, how nice it is, Yes Jen, 2015, Be Honest with yourself….” But what Bill doesn’t know is the brutal honesty of Duchenne. The carrot of Trial 204 dangled in front of us for months, 100 miles away in Columbus, perhaps that will be, could be the life changing trial for Owen, if only they would call, if only they would start dosing, if only they would be ‘honest’ with us. I have this saying I try so hard to live by, “I can handle ‘no’ … no news is worse.”
I can push my brain, my heart, my thoughts into the honest path that Duchenne has in front of us. I can count on the tears, the aches, the pain that Duchenne has paved for us and the road we have walked. But I can’t be honest with you or with Duchenne, not for one second can I buy into its honesty.
My aunt said to me a few months back that she can tell the smile on my face hides my pain. She herself was in a lot of pain, so I never really answered her. Ironically, I just smiled.
Honesty – Duchenne is painful. Duchenne is dreadful. Duchenne can be the smothered air slowly sucking out a flame in the wood stove, so not to burn the house down completely, just to burn enough, so painfully slow.
I am not going to be honest with myself. Sorry, Bill. I have to do just the opposite. I am going to do my best to let the light shine through my smile, yes, even if there is pain in it, it still is a smile.
2014 was supposed to be the year for Sarepta, for GSK, for our breakthrough.
So in all honesty, 2015 is going to be the year that I accept there may or may not be a breakthrough. The year that I accept the pain and not necessarily let go of the hope that 204 will actually happen, but let go of chasing the carrot and really, really just enjoy the ride.
The simple pleasure of prolonging the Christmas season with a few white lights outside, the rich smell of snoring wood rapid in the wood stove. The beautiful souls of my husband and boys tucked sweetly and safely upstairs in bed as I write this to you.
I guess I was wrong, and yes Bill you are right. I can be honest with myself in 2015. I can love harder, shine more, be present and chase the pain away, because after all I have been given the greatest gift, and I am lucky enough to know it.
Shine on 2015 and beyond, in all honesty.