I so wish everyone could see this view, a buck just strolled by (don’t tell the boys), gentle summer breeze, tree frogs and crickets chirping. It’s been a wind down month since the Picnic in the Park on 7.9.16. We were able to enjoy a week in PA at the family cabin, pool time, swim Tuesdays, bonfires, grilling and yes, the Tree House.
We are still in awe at this majestic structure that Owen wished for and it has come true. Rumor has it that it is over 1,200 square feet. It’s not that big, but certainly bigger than most New York City apartments. It is so humbling the amount of generous spirits there are in the world. If you ever doubt the human spirit, just come sit here and see the view from the Tree House. None of it possible without all the donations of those supporting Make a Wish. We are rounding completion of the interior and hope to showcase it by September. We can’t wait for the boys and their friends to have their first camp out! Come share this view from the tree house, anytime!!!!
Yes, we said NIGHT golf!!!! Join us please along with the generous hearts of Tom and Becky Hudach as they once again host a golf event just for John Owen’s Adventure! The tenacity of this family to year after year plan, organize and host this entire event is bar none incredible. This year, Night Golf is the theme with glow in the dark golf balls – a sure to be awesome DATE NIGHT! So join us please and sign up by 8.20.16 via this link (http://golf4joa.weebly.com/)
We moved our running team to the Nationwide Children’s Columbus Marathon / Half Marathon. As you know, Owen’s trial is hosted at Nationwide Children’s Hospital in Columbus, so why not run in support of this amazing place? It is not too late to join our running (and walking) team. The marathon is 10.16.16 and promises to be FLAT!!! (Yea, no hills!). If you are interested check out the Moving Spirit page or email email@example.com. We will train you – you can do this!!!
supporting JDRF 8.13.16
So excited for the 17th Annual JDRF Scavenger Hunt on Saturday August 13, 2016, scavenger hunt from 1:00-4:00 PM in Put in Bay!!!! Check it out by clicking here, come join us for an awesome day on the Island for an amazing cause!!!
Join us for a great night hosted by Mindy and Doug Lee at their Rhizo Kids Fundraiser Rhizo Kids Need a Hero Night at the Races!! I will be running the 7/11 table and need your support for this amazing family. I hope to see you there, click here for more info.
Love to be part of a reverse raffle and amazing date night? Join Braedan’s Bridge, our good friends Tammy and Scott Henegar at the Tam O Shanter center in Sylvania OH for an awesome night! Please click and share these details!
This was an amazing night! The weather was spectacular and the crowd HUGE! We so appreciate all the folks that always make this event happen, the countless volunteer hours and all the support from each one of you to support the event by presence and pocket. Save the date for 2017 as we will be hosting our 10th year – it is impossible to believe we have been on this journey for ten years. July 8, 2017 – don’t go planning any graduation parties, vacations or weddings – plan to be present at JOA 7.8.17!!! We need ideas to help make this EPIC so please share any advice in making our event the show stopper ten year event!
So grateful for the legs and hits on the Lumberjack 13U 12U and 11U Travel Baseball teams!!! Every single base made this season added up to $$$$ for Duchenne Research! Together the teams raised over $2,700 towards research!
So Rutger will be heading to High School in a few weeks, we know these four years will disappear and he will be off to college before we know it…. Soak it in … soak it in…..
Wade will be heading into fourth grade at St. Albert the Great…. Trying to prepare for the work load, fourth grade is tough, but he can do it!!!
Owen will be heading into seventh grade at St. Albert the Great. He continues to do amazingly well with the trial, small improvements and sustaining in areas we thought he would certainly not. Sadly, we have ZERO news on the FDA decision to approve Eteplirsen. April feels like years ago, and still mum is the word out of DC on when they will stop screwing around and start changing the lives of all our boys.
We will have a bit of a blip in the school year as Owen will be heading to surgery on 9.1.16 to correct his spine. This is a very common issue with Duchenne and a very common procedure, though major surgery, we do expect him to progress just fine. We do ask though for specific prayers as he endures this procedure and the long recovery road. We will keep you posted, but know that he has this …. Owen is very brave and is ready to fight the good fight, in his own words, “If it’s broke, let’s fix it!”
Thank you again for your unending love and support as we constantly pray to derail Duchenne.
We hope to see you soon