Hang on to your hats, because this is going to be long winded…..
It’s been a while since we have given a long update, so I trust you will forgive us and hope that you take the time to read through each of these very important, some exciting, some nerve wrenching, some just insane, issues we are tackling in the first months of 2016.
So proud of him as he is officially moving on to High School in the Fall. Confirmation, Graduation from St. Albert the Great and getting a job (soon). He constantly is our gift and we are grateful!
We are so humbled to know and feel that many of you look to Owen as your Hero, as you know, he is our Hero too. Every day we are blessed by the love of our three boys, Rutger, Owen and Wade. On May 7, 2016, Owen was named the 2016 Cleveland Clinic Children’s Courage Award recipient. Check out this amazing video made to honor Owen and our journey Just Click and watch!
Our cities and school as well recognized the great Hero in Owen, St. Albert the Great held a school wide celebration on April 29 and the Mayors of North Royalton and Brunswick declared Owen Dumm days in each of their cities. Owen was selected out of hundreds of children treated at The Cleveland Clinic Children’s hospital. It is so humbling because there are so many Heroes right in our backyard, how we wish each of them could have special recognition that Owen and our family had on May 7.
Saturday May 21, 2016 we will host our third annual 5k / 10k Run (5K Walk) Camo Run ~ It is amazing to see all the support of our North Royalton Police Department, Carrie Cerino’s, Romano’s Farmers Market and Dr. Bobby Le as we run through the streets of North Royalton supporting JOA and derailing Duchenne!! Look out runners ~ as you go past our house, Owen will most certainly spray you down with the garden hose!
Thank you so much to our marathon momma, Elsa Kilbane and she makes sure this race is flawless each year! Elsa just finished her 9th marathon on May 1 (Pitt) to support John Owen and Derail Duchenne.
We are so blessed to have her constant steps and spirit with us and fighting for Owen...xoxxoxo
Take me out to the ball game….. yep once again we are blessed by the amazing LUMBERJACKS and Impact Team Sports as they raise funds for JOA for every base they get on this baseball season!
Interested in getting your team on base for Duchenne?
We are so excited and blown away at the amazing organization in Make a Wish and the partnership we have created with Payne-Payne Builders, Inc. They are granting Owen his wish, his very own wheelchair accessible tree house. Something he, his friends, his brothers and family will enjoy for years and years to come. So amazing the strength of giving of in Northeast Ohio. We are constantly reminded of the goodness of others in our community.
To learn more about this adventure, check out the Make a Wish site and be sure to make a date this summer to come check out this amazing house!!
Sleep over's encouraged!
Mark you calendars and be sure to join us on our epic annual fundraiser. This is our biggest effort to raise dollars for research and your constant support these past nine years has proven our JOA supporters
BRING IT every year!
We are gearing up for our ninth annual Picnic in the Park on July 9 at German Central. We can’t wait for the amazing evening in this beautiful park all to simply celebrate life and family ~ We are in need of product donation for the big day, please see our pledge form here and feel free to contact firstname.lastname@example.org for any donation ~ big or small we need them to derail!
April 25, 2016, historic for Duchenne Muscular Dystrophy.
1,000 people met in Hyattsville, MD to discuss the accelerated approval of the drug Owen has been on for 58 weeks, Eteplirsen.
I can’t help but watch and re-watch the amazing videos from this day that our Warrior moms and dads in their amazing nonprofit organizations made with regard 4.25.16.
Over and over, reliving the day – the highs and the major lows. At times, I wanted to literally get up off my chair and go scream at the ‘experts’ on the other side, texting my sister suggesting I might go to jail if the conversation from the FDA continued in the way it was.
During the FDA presentation, Dr. Farkas made comments like boys with duchenne could walk longer if they tried harder....the inaccuracies of the presentation about Duchenne were painful to listen to.
Living with Duchenne is something we know you cannot possibly grasp.
We get it, really the normal day to day is just not a ‘norm’ in the common household. So any outsider giving his opinion on what John Owen should, could or would do or not do if he ‘tried’ hard enough really would not stir the blood in my veins; honestly I’d take that as the opportunity to explain the science behind Duchenne and that in fact DMD is a genetic mutation that prevents our son from walking any steps because simply his body does NOT product dystrophin because his is missing exon 49 and 40 on his Xp21.
Right in front of your eyes and ours, every day. No exon 49 and 50 on his xp21 means no dystrophin, means no muscle regeneration. Science, fact, simple.
Apparently not for the people you pay your taxes to, like Dr. Farkas.
As his clear and irresponsible comments made to this group of moms and dads on 4.25.16 proved. He simply does not, in his highly educated status, understand the science behind missing an exon, duplicating an exon or two or stopping a condon on your xp21……
We are not a PHD, MD, PCNS, DNP, ODE, OND, CDER, MSc, CEO, ODE-I, MS, PharmD, FAAN, MAS, JD, MPH, RN, or any other acronym that costs thousands of dollars to earn.
We simply are
And as parents, we see the science working. Though Owen has not given a muscle biopsy so the above acronyms can scrutinize not the dystrophin they would see growing (as most acronyms would do), but they’d scrutinize how much ink was used so to dispute the science behind the drug.
I feel as if I am rambling, but I just can’t get into words how completely disappointed I am with the fight we have with the FDA with regard to Eteplirsen. Ignoring the science in front of them is simply irrational and inexcusable. And I cannot add enough, YOU, US, YOUR NEIGHBOR, YOUR EMPLOYER, YOUR PARENTS ON Social Security…. Etc….. ARE PAYING THEM TO DO THIS!
Congress gave the FDA the ability to listen to patient voices through FDASIA. This group of ‘experts’ decided to focus on the ‘limited’ group of 12 boys and the argument of biopsy’s were not giving them enough data. Then Farkas threw in that boys with Duchenne can spontaneously create dystrophin…. Oh my goodness, what boys? Because we should study them, right? Almost to suggest, Tony Stark himself can show up as Iron Man? What an unreal meeting we were sitting in with this man……
It was a dream world for me on April 25. I simply could not believe the madness. I went to sleep that night thinking two things:
God will move the mountain in His time
I want my money back.
Listen to the UCLA video where 13 Global Duchenne Scientist shared their interpretation of Eteplirsen, many of which treating the boys who currently are on Eteplirsen and see the science behind what is working on a daily basis.
Listen to this quick video from the RACE TO YES
Read the comments in The Wallstreet Journal
At the end of the day – we are all moms and dads, parents of boys with little chance of a life that most boys in your life have. It is a group of people, that each one of us moms and dads would trade their lives to not be a part of.
We’d give it all to simply not know you.
And at the end of the day, this FDA panel let us down.
Looked at the proof in front of their noses, and snubbed them right at us, stating "I want to tell you the truth about Eteplirsen.” Wrong! When Owen opened his own Easter Eggs this year, he told us the truth about this drug.
When Owen moved his books on his desk by himself, he told us the truth
When Owen clears his plate on his own, he tells us the truth,
When Owen bends down and scratches his ankle then lifts his torso back up, HE TELLS US THE TRUTH ABOUT ETEPLIRSEN
This drug will help thousands, but the board, wrapped in their arrogance, rested on the framing of questions instead of science.
What would you do if this was your child? I certainly believe the rage we have inside would be boiling in you as well. Pray, yes, we are 10 days away from the final decision. Pray that on May 26, 2016 the FDA will Approve Etelpirsen.
Then we need you to mostly Act
Come out, be at our Race this weekend, ask your company to donate a product to our Picnic in the Park…. Be present for Owen, because when you do, you are acting on behalf of an enormous community that will, come hell or high water, end Duchenne.
We hope to see you soon
God Bless you