John Owen's Adventure, Inc.

~ Staying Relevant ~

3/4/2019

I am not going to lie to you, running a non profit for your child is not easy. Trying to balance everyday life with running like mad to make a difference in this disease is hard. I would say the first five years of JOA’s existence was pure panic. I think in that panic, we created some really awesome fundraising moments and movements. We are so grateful for the grassroots fire that started in JOA in those years of panic. I think without the overwhelming support, we as a fighting family could have crumbled.

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!

2019 EVENTS

We are thrilled to bring Nerf Battle to North Royalton on March 30 from 1pm to 330 pm at North Royalton Field House. We are so grateful for the Schultz Family as they help us Host this great event.

This event is open to all ages and is a great way to get the cabin fever out! Click here to register for $10 fee.

Our Camo Run that once filled the streets of North Royalton is a bit smaller each year, so we (with the Kilbane Family) will host the Camo Run Lite again this year at Bonnie Park on April 13 ~ 5k Run or Walk and donations in lieu of a registration fee. Please join us, click and help keep this event relevant!

~ CLE RITE AID Baby~
Elsa and I will tackle the Rite Aid Half Marathon on May 19! If you’d like to join us in this Moving Spirit Adventure, please email me at jen@joainc.org.

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!!

710,151

9/23/2018

Taking a walk with Tony the other day, we both crunched on a leaf on the ground and instantly caught the scent of Fall. It is so refreshing to go from 90 degrees to 66 in one day – gotta love Northeast Ohio!

Fall means routine. Back to school, back to rushed nights and early mornings. Football, amazing walks and beautiful colors. This Fall, Owen, now a freshman in high school, is not on a ‘football team” though his teammates from 7th and 8th grade certainly have not forgotten him.

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.

Today we received a beautiful donation from a St. Ed’s teacher. He was so inspired by Owen’s friend, John Thompson’s paper about experiences that shaped his relationship with God. John’s story included Owen, his life and their friendship. Again, as a momma I couldn’t be more proud that through Owen God is working. He is working in so many others and if we can bring people closer to Christ, again though I utterly despise Duchenne with every bone and breath in my body, then Bring it. For God will Win and not Duchenne!

Speaking of God – and I know I am going off the normal trail of our updates – but I read a post on FB (btw I am trying to stay off as much as possible) stating “How do you feel about God allowing so many youngsters to be stricken with DMD??”” Honestly, I could not even let this type of discussion process in my brain. And again, I will go directly to us making the absolute best life for Owen and through our fundraising efforts, as much money we can raise to make it the absolute best life for all that battle this beast every second of every day.

Now – on to our next “Battle” Elsa Kilbane, my best friend, and I will be at the Akron Marathon on this Saturday, Elsa the Full 26.2 – me the Half or as much of it as I can. She will be running her 13th Marathon for Owen. She is the true example of #initforthelonghaul as if you calculate the number of marathon steps she has run (not training steps just marathon steps) my Garmin estimates that 4 miles is 8,340 steps – so 13th marathon – get this is 710,151 steps!

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

Speaking of 51 (this update does have a lot of segues sorry) Owen continues to receive weekly infusions of Exondys 51 (Eteplirsen). As a refresher, the medicine turns on the DNA in his body so that his brain allows him to start producing dystrophin. The protein he is not able to make on his own.

Is it working? YES

How do we know? Results – his lung and heart function continue to be stable – he simply is not getting worse. I don’t want to tell you what getting ‘worse’ means, you literally just have to open Facebook to any Duchenne community and if a candle is not burning, a new fear or weakening organ/muscle is posted.

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.

Wade…… he is great! He is in sixth grade this year and really coming into his own. He continues to read a book at least every other day and of course is loving the video game playing with his brothers.

Wade continues to be the one that always makes us laugh. Goodness, where does that kid get his humor? We love it!

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.

And Larry! He is four years old today in human years. He continues to be Owen’s right hand man, constant companion and BFF

HAPPY BIRTHDAY LARRY!!!

So – lots to cover in this update! It feels like there is so much going on but all at the same time – nothing new at all! Oh – we did get to see an OSU Football game this weekend! We were the highest bidder at the El Salvador Mission fundraiser this winter. The boys got to hang out with their cousins (and a great tailgate with RJ Sullivan and fam xo) while Tony and I had a great tailgate at “The Nut” and awesome seats. The Band was just so amazing! It was a great little get away, right, where for 24 hours you forget you have Duchenne. So worth it!

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

Chilin this 4th

7/4/2018

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.

We are so grateful to be free and to live in this amazing country. All that have sacrificed for our very freedoms to type this and share publicly. To start a non-profit and raise funds for research for Duchenne, to work hard, raise a family and provide so many things that most of us take for granted (food, shelter, healthcare).

We want to say Thank you to all that made and make our freedoms possible. What a blessing it is to be Chilin with the boys in the land of the free!

God Bless you this July 4th and every day (and yep we get to say God Bless - Yee Haw America)

We hope you can join us in 10 days to celebrate our Picnic in the Park on 7.14.18 from 4pm to 10pm. As always we have an amazing line up - Live Music, Great Food, Kids Games, Adult stuff and amazing raffles. Please be sure to stop us to give hugs and hellos as we are so very grateful for each of you that continue to lift us up while together we #derailduchenne!
With Love - Tony Jen and the Boys xoxox

10 years Still Strong

2/11/2018

Here we are in February, 2018. Ten years from diagnosis. It is so hard to believe just how fast these 10 years have flown by. What is even more incredible is the constant outpouring of support from our family, friends and this awesome community.

We have put over $500,000 directly into the hands of science to advance the treatment of Duchenne and one day, God Willing, a complete cure.

Thank you to each of you for the love we continue to feel from you. We are gearing up for our 2018 events. Please mark your calendar and plan to attend!
3.18.18 Nerf Battle
5.5.18 CAMO 5K 10K Run (5K walk)
7.14.18 Picnic in the Park

Sunday March 18, 2018 ~ JOA Nerf Battle~ We love this event because your kids can run around from 130 pm to 4 pm and you will have a very peaceful Sunday Night! Seriously, this is one great family centered event, fun for all ages. $10 per player. We supply the bullets, you bring the nerf guns and safety glasses! Oh and bring cardboard too so the kids can build cover!
Please share this flier (click) and pre-register on line or at the door!

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.

How it works

Chris Hammer-Huber, Impact Team Sports V.P., 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!

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)

Picnic in the Park
This event is so successful because of you! Your willingness to share our needs and donate products / wine (for the wine pull) and Silent Auction is awesome! Keep it going in 2018. Please share this request (Click) and the pledge request (click) with your workmates and at your favorite stores!
We have an awesome LINE UP on 7.14.18
Victory Highway
Nerf Battle (byo Nerf Gun)
Huge Raffles
Wine Pull
Kid's Games ~ Family Friendly
Jungle Terry
FOOD ~ Affordable Food~~
and we are ALL about the FOOD
~DQ
~Fire Truck Pizza
~Mama Miama's
~NEW THIS YEAR Nikos Gyros!
We need your help in securing PRODUCT DONATIONS! Please print the Donation Request Letter and the Pledge Card and share with your workmates, neighbors, friends anyone that is willing to help.

We also would LOVE for your to help us with the Wine Pull~ Please donate your favorite bottle of wine (approx. value $20).
We are so blessed by your support! Thank you and we hope to see you the Second Saturday in July!
Huzzah! Come on out

So what is going on?
We are all doing great, it’s like the same ole same ole, which is really, really good! The boys are hitting the books very well, earning great grades. Wade is in ski club this year and loving it! Rutger is taking a few college courses while in his sophomore year at NRHS. And it is impossible to believe that Owen will be graduating from St Albert the Great this June, moving on to North Royalton High School.

So proud of him as he was commanding his future at the NRHS counseling meeting. That maturity switch just kicked on in. We could not be more proud!
We continue to follow CRISPR/Cas9 with great faith that we will see an end to this horrific beast. Please continue to support JOA through prayer and pocket, as because of you we will #derailduchenne!

God bless you
The Dumms
2.11.18
-- check out the latest post regarding our D Day 10 years ago--

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.

10 years
Of course there were days, times, nights, weeks when we let fear win. When we let Duchenne push it’s way to trump our joy. But more and more, we have learned to not let fear win, to beat it down and tell Duchenne to Stick It.

We don’t know what the next 10 years are going to look like, but if they are as joyful, beautiful and amazing as these last 10 have been, then Bring it.

How blessed we are to have Dr. Friedman leading our journey, as equally blessed to have every soul that continues to lift us up and stand by our side on this journey.

10 years, just amazing

So 10 years, Eh? What does that mean?

7/2/2017

7.8.17 10th Annual

JOA Picnic in the Park

10 years ago I never would have imagined the path we have walked. We went from three healthy beautiful baby boys ages 5 – 4 and new born and within weeks were hit with the hardest thing we ever encountered, diagnosing John Owen at age 4 with a muscle killer, Duchenne Muscular Dystrophy

I can’t begin to describe the helplessness we felt during these first months as we combed the internet and every publication we could to understand this disease. Then searching the healthcare providers from Cleveland to Cincinnati to Houston to find the best possible team to help us, and it was at the Cleveland Clinic that JOA was conceived. In a tiny doctor’s office on M7 with Dr. Friedman when he told us the best way to help John Owen was to raise money and lots of it.

The first Picnic in the Park was held at Camp Cheerful in August 2008. We expected 300 guests and were overwhelmed with 1,000+ we ran out of food 3x! From the start, our community starting walking our path, Sprague Road Dairy Queen (Zwolenik Family) offered their ice cream for our picnic, provided volunteers and donated all money raised. To this day, Sprague Road Dairy Queen is our #1 vendor and we are beyond grateful. From there the spark started the flame as that first event raised $15,000.

The past Picnic in the Parks have seen over 2,000 guests per year. In 2009 our venue moved to the German Central Foundation on York and Sprague in Parma. This gem of a property is the perfect setting for our outdoor live music, vast kids games, awesome raffles and fantastic food.

2017 we will host an amazing Wine Pull, Bingo and side boards which is new to JOA. Certainly our old favorites are here from 4pm to 10 pm at German Central in Parma
Entertainment

Jungle Terry ~ 730 to 830 in Vienna Café
Kids Games ~ 5 p to 9 p 3 for $1.00 or double Wing span for $20
Pin Ball ~
Nerf War ~ Bring your Own Nerf Gun & Safety Glasses – Bullets provided $5 per half hour sign up Registration
Hole in one contest 5 pm to 8:45 $5.00 for 3 shots
Victory Highway ~ Pavilion 6p to 1000
Pull Bingo
$2 Side Boards

~~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!

So what has the last 10 years meant and how much we have raised?

I can’t measure the amount of awareness we have raised as that has always been our main goal of JOA – when he was diagnosed we had no idea what Muscular Dystrophy was or meant. Today unfortunately we are all too aware of this beast. I can say that we have made an impact in the awareness in our community and for that we are beyond grateful!

We can say we have put over $450,000 into the hands of scientist working for a cure. Some of that research has gone from mice to men as we are lucky enough to realize every week as Owen is still part of the Eteplirsen trial and receives this genetic modifying infusion weekly. We continue to see improvements in him and are grateful his major organs are extremely stable at the age of 13 – REJOICE!

We have modified our vehicle, our house, his bed and our lifestyle. We’ve shopped and purchased more medical equipment that I’d care to express and one that a kiddo from 4 years to any age in childhood should never have to try out.

The amazing part of this journey is ‘Larry’ Owen’s Service dog, he is with him side by side in all he does! All of this is to make certain that we are providing the best opportunity for us as a family unit to stay that way and to stay focused on living and being grateful for each other and for each breath we are given.

We have felt the empowering embrace of this community. From day one to today. Each and every event we have hosted has been filled with joyful attendance from our family, friends and North Royalton /NEOH community.

This community helped to build an elevator in our home, that without we certainly could not have sustained our family unit in the house. This community has donated year after year thousands of dollars in product donations, gift cards and cold hard cash to raise money and awareness to derail this beast called Duchenne.

This community told the FDA how they felt and their desire to make the pathway to end Duchenne Known in Washington as we celebrated the approval of Eteplirsen on 9.19.16. This community is as much a part of JOA and the celebration of our quest for a cure as Tony and I are. We feel it – we are lifted up and we are inspired by you. And know that we could have never come this far without you. I do have to say that it feels amazing when folks see our Derail Duchenne bumper sticker and introduce themselves as supporters of JOA. We feel the love, please keep it coming!

What’s next?

We will keep trudging forward down this path until this beast is dead.

We have to derail Duchenne, not just for our son but all the boys in the entire world that can’t raise their hand to brush their teeth, can’t join in a pick up basketball game, can’t run up and hug their Dad when he gets home from work.

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!

Currently this technology is still in mice. But the hope that we can bring it to men by 2020 is lingering out there. Our plans for JOA is to support this amazing drug in every way possible. Our goal is to raise $50,000 at our Picnic in the Park. From $1.00 to $10,000 every single dollar will make a huge dent in our goal. We can’t stop until we end Duchenne. We will derail Duchenne with our North Royalton Community.

We need YOU to #derialduchenne on 7.8.17

We hope to see you on 7.8.17 at German Central and hope you celebrate along side of us.

We continue to be grateful to you and to our Lord that keeps on showing us the way down this path.

God bless this amazing nation as we celebrate our Independence. America the Beautiful ~ One Nation Under God ~ We are beyond blessed and beyond Grateful

10th Picnic in the Park 7.8.17

6/4/2017

Yeah Baby ... Yeah Picnic in the Park ... Baby

It is so hard to believe we have been fighting this beast for 10 years. How I wish I had a different anniversary to share, like 10 years Free of Duchenne, but Dang It All,

I hate Duchenne.

I know we are fighting the good fight, but at times, you know, it just stinks…..

Enough already, so ready to #derailduchenne…………

You keep us going, the constant support, generous spirit and always present prayer gives us HOPE that maybe one day – we can say “Hey … Wow!!!! It’s our 10th Anniversary Free of Duchenne.”

We can make that happen, you can make that happen. Keep this going and keep the giving coming!

Invite your Friends, Family, Co-Workers to our Picnic in the Park on 7.8.17 – you die hards out there know this is an incredible Family centered AFFORDABLE event….

Please share our pledge card and flier – we need more product donations for our raffles and would LOVE to knock the socks off attendance this year~

We have great new events
                   Bingo
                   Side Boards
                   Wine Pull
Coupled with our tried and true great kid’s games, raffles, GERMAN BEER, amazing FOOD (all about the food) and Victory Highway to keep you dancing! The handcrafted raffle items are amazing again this year as well, the basket raffles are shaping up to be STELLAR!!! Disney tickets, Airline Tickets, Tv, Furniture, Artwork, gift cards…. Oh so excited!

A GIANT Thank you to our beautiful Grandma Barb Muniak for her relentless work in soliciting so many amazing raffle items!!! Love love you!!

Oh goodness and do you know our Volunteers? The MOST dedicated in Northeast OHIO!! Sign up guys for your station as we so treasure your service and we so need you on 7.8.17!!

http://www.joainc.org/volunteer-opportunities.html

For those that need a checklist to keep you motivated and focused…. Here you GO Baby! Derail sweet thing!!! Derail…….

So for the rest of our life…..
It has been an insane year with Owen’s surgery in September and his recovery. Thanking God that we are still in the Eteplirsen Study so he continues to gain strength as he continues to still recover from spine surgery.

Loving on the Sunshine and that the Boys will be off school in a few days! Rutger flew through his first year of High School and despite our urging to stop – he keeps growing! Wade is doing swimmingly in school as well and all three are just ready to do nothing but Chill, enjoy the treehouse, Larry and life.

Happy Father’s Day to all of our amazing Dads! And please, keep doing what you do best, pray for our Duchenne boys and support our biggest event of the year!!

God bless you and Happy Summer
The Dumms

Survivor

1/30/2017

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

Mile per mile... we got this

10/5/2016

Last 2016 JOA Event, Catch our Spirit!

So excited that we can celebrate this awesome year with our last event, our Moving Spirit 2016 Team Half Marathon and Marathon. We get to celebrate the approval of Eteplirsen by the FDA in the very city Eteplirsen was first dosed in the original 12 boys, Columbus, Ohio at Children’s Nationwide in the very race sponsored by Children’s Nationwide!

Kathy Warner, Diane Eichman, Peg Sonday and James Harrison will rock out the Full Marathon on 10.16.16! Deb & Ronan Factora, Jack Reardon, Julie Reardon, Sally Kapcar, Christie Kinney, Carrie Valdez, Elsa Klibane and I will run the Half!

If you recall this team has run many, many miles for Duchenne. From Fulls to Halfs to 10k and 5k all steps to stop this beast of a muscle killer. On Sunday 10.16.16 we will run 222.70 miles. Please say a strong prayer Sunday morning that we make it through these many miles with safety, courage and joy in our steps.

Consider please donating this week to our team.
$1 per mile = $222.70
$0.50 per mile = $111.35
$0.25 per mile = $55.68
$0.1 per mile $22.27
http://www.joainc.org/contributions.html

Any donation great or small will be so appreciated. We will celebrate every step with the FDA approval. Join us through pocket and prayer to #derailduchenne

Have to leave you with this heartwarming story about
Owen’s Football Team

Gone……

It’s almost an out of body experience to listen to one of your kid’s friends share his thoughts about your son and their friendship.

Of course, like all parents, we want our kids to have friends, be social and create great childhood memories. I never really thought about the impact our kids could have on their friends, I guess I have just been stuck in the ‘so grateful they have friends’ mode to even consider the ‘what our kids could mean to others.’

Last night, I stood in for Owen at the St. Joseph & John / St. Albert 7th grade football meeting. This team is a joint football team between the schools of 12 and 13 year old boys. Half of these players are Owen’s classmates, we have been together since Kindergarten (some even pre-school). We’ve been blessed by these families with their generous support for JOA and even more, their heartfelt love for Owen and our family.

Owen was inducted into this football team last night as the 24th player and each player will wear Owen’s name on their helmet all season. This started from the pure friendship from Owen’s friend John. The day of Owen’s spine surgery, John was really upset at practice and asked his coach and teammates to pray for him. From that, the spirit of Owen on the team came alive. They asked Owen to come last night to receive his team helmet and jersey and talk with the team about Duchenne. Since he was not up for it physically, I gladly took the challenge.

After my short talk about Duchenne and mainly special needs kids, his friend, John gave an amazing testimony about his friendship with Owen. It was one of those times that though I did not record his talk, I will forever replay his very mature, kind and heartfelt words over and over.

John said Owen was one of the best friends he’s ever had. Not many special needs kids have friends, let alone, one’s that call them their ‘best friend’ (tears). He shared the qualities about Owen with his teammates, words that will forever make me proud as a mom, knowing he is a good, kind child to others. Then John shared how he felt the day Owen had surgery….. my heart stopped for a beat hearing these words….

He said, “the day of his surgery I was really scared because Owen wasn’t in school, he was just GONE.” At that point John (and me) got very teary eyed and I felt what he was feeling…. As if to say what if he is “GONE” and not coming back…. (Curse you Duchenne for filling our hearts with fear and worry … Curse you Duchenne for stomping all over our childhood….) Oh this sweet child, in front of his peers, so willing to cry for the fears of his friend and this dreadful beast of a disease.

I just can’t describe how I felt exactly listening to John. But when he was done, most of his teammates were tearing up, and I knew that Owen will always be loved by this group, not just as the 24th player, but as ‘one of the best friends I’ve ever had.’

God Bless you

It's APPROVED! 9.19.16

9/23/2016

You did this, We did this, They did this, He did this!

FDA Approves ETEPLIRSEN 9.19.16!

This is EPIC, as this is the FIRST drug therapy approved to help Duchenne Muscular Dystrophy!

By the Mercy of God and the work of so many fierce warriors, this drug is APPROVED!

It has been a long journey, we’ve been watching this drug since it was in mice back in 2008 when Owen was first diagnosed. This is the drug that one doctor told us would be approved and in Owen by 2010…..This is the drug that you have made possible through this community’s donations to exon skipping in working with PPMD from day one.

We did this! Thank you so much! The battle is won but the war rages on! There is still much to do. This victory is one step for our boys that can benefit from this drug (13% of the Duchenne population) and we must continue to raise funds and awareness so that all drugs that are either in ‘mice or men’ can become approved and quickly. Duchenne waits for no one!

Show us YOUR Strength .....

Show your support this weekend by sending prayer and pocket ($) towards Elsa Kilbane as she runs her 10th Marathon for John Owen! She will run the Akron Marathon Saturday morning, please donated $9.19 (or any combination of $9.19, $19,19, $59.19, $109.19, etc) at JOA. This will highlight our community’s strength in not only recognizing our awesome efforts in supporting this AWESOME, EPIC history making event, but supporting the very spirit that makes JOA amazing.
Donate by clicking here

Thank you for your consideration!! Congratulations to everyone that made this historic event real for Owen and our Duchenne community! God Bless you and Godspeed
The Dumms
xoxox

On a side note, Owen is still receiving weekly infusions of Eteplirsen. He is doing great! We will continue on the trial until it is completed early next year. At that time we will have a better understanding of when/how etc he will continue to receive the drug. Keep on praying that we will continue to make progress, gain strength and fight on!

Owen is doing well after his spine surgery. Physically he is a ROCK STAR, recovering very well! We hope to be back at school in October. Thank you for your prayers and all the support he has received during this time!

View from the Tree House

8/6/2016

I am writing to you from the porch of the tree house…. Yes I said “Porch.”

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!!!!

Night Golf? 8.27.16

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/)

Moving Spirit gone South
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 jen@joainc.org. We will train you – you can do this!!!

Scavenger Hunt
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!!!

Night at the Races 9.24.16
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.

All in for Duchenne 10.15.16

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!

Picnic in the Park 2016
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!

On Base for Duchenne
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!

What’s up with the boys?
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
The Dumms

<<Previous

~ Staying Relevant ~

710,151

Chilin this 4th

10 years Still Strong

So 10 years, Eh? What does that mean?

7.8.17 10th Annual

JOA Picnic in the Park

10th Picnic in the Park 7.8.17

Yeah Baby ... Yeah Picnic in the Park ... Baby

Survivor

Mile per mile... we got this

Last 2016 JOA Event, Catch our Spirit!

It's APPROVED! 9.19.16

You did this, We did this, They did this, He did this!

Show us YOUR Strength .....

View from the Tree House

JOA Tweets

Archives

Past JOA Updates

©2013 John Owen's Adventure, Inc.
JOA is a 501(c)3 nonprofit, EIN 26-2672169
All Rights Reserved
440-570-2167 jen@joainc.org

7.8.17 10th Annual JOA Picnic in the Park

Yeah Baby ... Yeah Picnic in the Park ... Baby

Last 2016 JOA Event, Catch our Spirit!

You did this, We did this, They did this, He did this!

Show us YOUR Strength .....

JOA Tweets

Archives

©2013 John Owen's Adventure, Inc.JOA is a 501(c)3 nonprofit, EIN 26-2672169All Rights Reserved 440-570-2167 jen@joainc.org

7.8.17 10th Annual

JOA Picnic in the Park

©2013 John Owen's Adventure, Inc.
JOA is a 501(c)3 nonprofit, EIN 26-2672169
All Rights Reserved
440-570-2167 jen@joainc.org