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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.
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.
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
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)
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!
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
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!
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.
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.
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
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!
- 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.
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
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
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