​​The last five years we found our way, what worked, what didn’t and have settled into a handful of really good fundraising events.  Of course our best is the Picnic in the Park.  It is similar to planning a wedding every year, and the generous support from our community is outright awesome! 
 
Together, we have put over ½ Million dollars into the hands of real science working to derail this beast.  For that we are so, so humbled and grateful.

​But again, I won’t lie to you.  We are heading into our 12th year of events, all focused on Family and Fellowship.  I, though, am having a hard time feeling relevant.  It is hard to keep the events fresh and exciting.  So, we ask you, is there anything at our events that you’d ‘wish’ were there?  We are so open to new sets of eyes and ideas to help us further derail Duchenne!  Email me jen@joainc.org with your helping hands and ideas!

 
And drum roll please…….. July 13 is our awesome Picnic in the Park brought to you by our beautiful sponsors and the generosity of our community donating product, gift cards, sporting event tickets and money to make this a great summer night celebrating to derail duchenne.
 
We’d love ideas and hands to improve this event.  We started our picnic when Owen was four years old and have catered to the younger crowd.  Well now, they have all grown up and we are looking for ways to incorporate 12 to 16 year olds in the event.  Even better, would be volunteers to help run that idea 😊   of course we will still have the great kids games, Jungle Terry, live music, tons of raffles, great food and German Central spirits!

It would mean so much for you to join us at one or all of our events!  If the mood strikes you, please consider a donation to our JOA Picnic in the Park via our pledge card.  Please share this request with your workplace, friends and neighbors, anyone that would open their heart to donate to JOA so that we can derail Duchenne

And a very special Thank you to the Frangulea Family, Mun Mun and Opa and Marles Printing who made our Spring Mailer possible – look for it via snail mail and share with friends and family! 
 
Thank you and God bless you!!!
(click the pictures of the events to download sharable pdf fliers)

PS About Us
The Boys are doing awesome!  Rutger continues his job at ACE and is rocking out eleventh grade at NORO.  We can’t believe how fast this kid grew up, before we know it he will be an adult! Ugh!
 
Owen has really settled into ninth grade at NORO.  Though we say every night, 5:45 am comes fast – other than the drastic early rising – he is doing awesome.  Great grades and he is even participating in a few social clubs.  He continues with his weekly infusion of Exondys 51 (God send) and we continue to praise his stable health.
 
Wade is rounding out sixth grade with excellent grades and is pretty much always reading.  He did have a great ski club season and we even got out to PA on a quick ski trip to visit our friends the Tomkovicz’s that moved last year. 
 
Tony and I continue to be amazed at how fast the weeks fly by.  Hoping to keep these boys young and at home as long as possible.   We are blessed, truly truly blessed in so many ways!
 
We hope to see you this year ~ please be sure to say hi and give hugs!!
 

We received a text from Coach John that one of Owen’s teammates had written “Derail Duchenne” on his football cleats.  His dad hadn’t noticed until after the game and he asked Michael why he wrote it: “When the game got tough he’d just look down and remember who really is the toughest and it made him stronger.”

It really still shakes my core when we learn of the impact Owen’s life has on others.  The simple reminder that we all struggle but knowing we have someone to lean on for strength, right?  It is amazing and more so that it is our son who shares that strength.​

It is such an honor to be the mom of not just Owen, but Rutger and Wade.  Though every day we have struggle, from watching Rutger and Wade be Owen’s hands and feet.  Feeling how unfair it is to them that their childhood too has been robbed by this beast.  But knowing that we together are stronger than we have ever been as a family.  I am so proud that we don’t hid our fears and our needs.  We shout for help and rejoice with you in the victories.  I know these lessons our kids will take with them to shape their families with and though I utterly despise Duchenne with every bone and breath in my body, I love that we have not let it win.​

YEP you see it --- don’t you????  
 
  51
 
If you would be so kind as to continue your support through prayer and pocket – we start at 7 am 9.29 and need all the lovin we can get so I can be sure to run her in!  Please consider a donation at http://www.joainc.org/contributions.html
​

I do often feel incredibly guilty that 51 is the only medicine currently approved by the FDA and that Owen is lucky enough to receive it (though that is not without a very steep price that sadly is coming all to fast upon our life).  It is so maddening that we don’t have a solution for ALL Duchenne boys – Right now! 
​
Though I certainly know there are many fierce families working around the clock through their non profits to find that fix, that solution, that and God Willing – the Cure that will truly End Duchenne.
 
So yes – it is working.  I continue to put my faith in our Lord that He will lead us to the next step.  As I said the medicine is incredibly expensive and I have absolutely no idea what 2019 will look like for our Family, I can just pray that God will get us to where we need to be.  And we ask too, that you pray for that as well.

And Owen…… he is loving ninth grade.  He loves his History teacher Mr. Folk.  Every night at dinner the Mr. Folk stories go well beyond the dishes being cleaned up.  His new aid, Mrs. Daville is also incredible and instantly feel in love with O.  From our Bus Driver Ms. Heather through ever person Owen comes in contact at North Royalton High School, we simply just can’t say enough!  We are so blessed with this community and so happy that he is doing so well.
​

 
Rutger…. He got a job at ACE Hardware.  He is really enjoying it and working out his schedule between high school classes and a few college classes, he is ready to get a jump on being an adult. He is a rock star driver and it is great having that extra hands on the wheel when we need it.  Hard to imagine he will be out of High School in 2 years. 
​

We are preparing for our 2019 fundraising events.  Our 5k Camo Run Lite was great fun – we will keep it on the books for early May!  Hoping to get more kids to the Nerf Battle as that is always a blast (early Spring).
 
And the biggie!! Picnic in the Park   Woot Woot 7.13.19  We need ideas to shake it up  - so please send us your comments on what you like, what you don’t like and what we are missing!  Gotta keep it fresh for our Duchenne boys!
 
God bless you and thank you for pouring your love on to us~
Tony, Jen, Rutger and Owen
9.23.18
​

Independence...…
​
So many days just fly by now that the boys are older and they, for the most part, don’t need us as they did when they were toddlers.  Teenage years, though precious, are certainly not filled with the clingy, sticky hands that our days were once filled with.

But it is all good. Right?  Can’t stop them from growing despite our urging.  Rutger is now 16 and driving.  He is taking college classes at Tri-C this summer, volunteers 3 days a week and is searching for a job – all things that take him daily away from our protective arms.  But its all good.
 
Owen is off to High School in August and though we all desperately want him ‘not’ to need us every day – physically of course he does – but certainly emotionally he is so done with being a kid and ready for independence.  Gosh, how I so wish we could fully give that to him.  But we try as much as we can!  Its all good!

Wade – though 11 and being the youngest, seems more like 16 as well.  His nose is constantly in a book, when of course, he’s not being Owen’s hands and feet this summer.  He is growing like a weed and ready for sixth grade at St. Al next year.  We really never thought the day would come when we only had one kid at St. Al. Oh goodness, stop with the growing.
​

Larry – well yes he is still awesome.  And Yes he still serves by Owen’s side with every breath.  I can’t believe how this dog is so attached to Owen’s side. 
 
Today we celebrate our Independence, 228 years of it!  Seems like a far cry from our boys, Right?  Seeking and grabbing their independence from us in just a few short years.  It’s all good.  Nothing will stop time and nothing can replace the great memories of our boys growing up.
​

JOA 10k / 5K CAMO Run (5k walk)
5.5.18 we will rock the streets of North Royalton in our CAMO Run!  Please consider joining us on Saturday morning.  Race kicks off at 730 am.  You can run the 10k, 5k or walk the 5k!  All levels welcome!  Pre-register by 4.28.18 to be sure to grab a goodie bag and great JOA gift!
Please share this flier (click)
 

10 Years
Today we got to see the guy that helped us start this journey, Dr. Friedman at CCF.  Sitting in the exam room we realized that this was our 10th year seeing Dr. Friedman.  We reminded Dr. Friedman that his first words of advice were ‘raise as much money for research as you can’
 
10 years
I can tell you, we have raised as much as we can.  Not just money, not just awareness but community and strength and memories and adventure and joy and friends…. We’ve done an awesome job in embracing this journey to fight this beast as best as we can. 
 
10 years
Driving back home, I couldn’t help but watch Owen as he looked past the window.  The memories of these drives home after each milestone visit with Dr. Friedman….. new casts, new meds, new stretches, new equipment, new surgeries, new fears…….  But you know, we made it through.  No wait, not we, He made it through just  like the warrior he is.
​

 ~~GREAT HALL RAFFLE~~
Tickets for raffle sold individually at face value or if buy $20 worth get (2) $1 tickets free
OR do a BOOKLETfor $20 (1 eXtreme, 5 11th Hr, 15 Epic)

• Epic ~ 50 numbered basket $1.00 Blue Tickets – put your ticket in the corresponding bag in front of the basket ~ Drawings held throughout night
• 11th Hour ~ $1.00 White Tickets~ Put your ticket in the drum, if your ticket is pulled grab whatever basket you want! Drawings held throughout night
• eXtreme ~ $5.00 Yellow Ticket ~ select one of the high tech items, put ticket in the corresponding box drawing
• 7/11 High Rollers – Dice game to buy tickets you have to play $5 = 1 ticket &  2 minutes rolling dice each time you hit a 7 or 11 you get a ticket – raffle picked after 930 – Winners displayed on white board at game
• Silent Auction ~ various items to bid on through 930 pm      winners on auction bid
• Wine Pull

Beverage Shack
Pop coffee desserts  JOA provided Free / Donation requested – Thank you Dee & Greg Puntel for your soda donation and all our awesome Moms for the bakery!
Food – Famous Daves –   DQ Ice Cream  Fire Truck Pizza  Mama Mia Italian Sausage
BAR - Full bar upstairs and beet truck outside

Thank you Grandma Barb for all your hard work in getting all the amazing Donations!

10 years went by in a flash.  We pray every day that we continue to be present for our three amazing boys, Rutger (15) John Owen (13) and Wade (10).  I personally am so beyond grateful to God that he gave me a husband that taught me what it means

• to be present over frantic
• to step back and enjoy the moment instead of looking with fear in the future
• and that constantly makes all of us laugh every day. 

Tony has passed on his humor to the boys, so our house is usually filled with laughter and pranks.  And for that I say, life is good.
 
What is on the horizon for Duchenne? 
CRISPERCas9 is a gene therapy that can end this disease. 
 
Yes I said, END DUCHENNE.
     Take a listen to how this amazing hope works!

Survivor
A word I’ve never considered to be part of our Duchenne world.
 
Joyfully, we all know and embraced a survivor.  Whether from a brutal illness or a strong warrior finally coming home.
 
The St. Jude Commercials (love) tears me up that 1 of 5 children with cancer will not survive.
 
In the Duchenne world, 5 of 5 children with Duchenne will not survive.  Since our diagnosis, day one, has never been about survival.
 
This year we had the honor of raising gobs of money for Duchenne Research through our various events, our biggest event, the Picnic in the Park.  Our spot on Board of Directors approved the disbursements of these funds to PPMD to fund CRISPR(Cas9).   This research is more than medicine, it is technology. 
 
Gene Technology
 
I finally found an hour to listen, really listen to this webinar hosted by PPMD in December. 
 
Listening to Dr. Olsen, it was difficult not to weep.  As always, these education pieces relive our journey – from day one diagnosis to the future plans Duchenne has for Owen and his sweet young body.  It is always painful to listen to our Duchenne reality.
 
Though my tears turned quickly into tears of joy listening as Dr. Olson said these words that made my heart stop beating for a split second……this technology is the opportunity to ‘end this disease in its tracks.’
 
That’s right
 
End Duchenne
 

I let this technology soak in throughout the day and as I drove home that night, I heard in my head, over and over…….
 
Survivor…..
 
Praise God that perhaps in Owen’s lifetime and all our current and future generations, we can know and embrace a Duchenne Survivor.
 
Please listen to this webinar, this technology, this HOPE   - Please listen by clicking here
Please support our efforts in 2017, we have several family friendly events to help us constantly fund the path to finally derail Duchenne.

Please read the PPMD News release from today, helping us all understand this amazing pathway to surviving duchenne.

Thank you and God Bless You
Tony & Jen Dumm
1.30.17