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.
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 [email protected] 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.
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 [email protected].
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)
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!!
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!!
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