Pawley Island, SC great time Wade got a doozy this week – full on toenail / half the top of his big toe STUBBED. So much so, that he will not go in the pool because it hurts too much. Sure sign of summer, right?
Running barefoot, carefree and WHAM, there it is.
So at the Dumm’s we are in full swing of Summer. Thankfully, Swim Tuesdays finally arrived all be it late due to our unprecedented and awesome summer vaca.
We had a memory building vacation out to GA, SC, TN all to pick up the new ‘Juggernaut’ (that is what the boys call it) and yes it is a force to be dealt with ~ our new handicap accessible all out Nissan converted cargo van (if this van’s a rockin…) All kidding aside, how lucky are we to be able to transport our clan flawlessly! We picked it up in Georgia (Tony, Rutger and Owen had a heck of a time which included a trip to the Vet and the ER, 2 AM arrival and 3 hour U-Haul breakdown on a GA State Highway with 3 trooper cars …. but when all was said and done they made it) and drove it for 8 days throughout the South vacationing and soaking it all in, because that is what we all need to realize this is exactly what life is all about – SOAKING IT IN!
Running barefoot, carefree and WHAM, there it is.
So at the Dumm’s we are in full swing of Summer. Thankfully, Swim Tuesdays finally arrived all be it late due to our unprecedented and awesome summer vaca.
We had a memory building vacation out to GA, SC, TN all to pick up the new ‘Juggernaut’ (that is what the boys call it) and yes it is a force to be dealt with ~ our new handicap accessible all out Nissan converted cargo van (if this van’s a rockin…) All kidding aside, how lucky are we to be able to transport our clan flawlessly! We picked it up in Georgia (Tony, Rutger and Owen had a heck of a time which included a trip to the Vet and the ER, 2 AM arrival and 3 hour U-Haul breakdown on a GA State Highway with 3 trooper cars …. but when all was said and done they made it) and drove it for 8 days throughout the South vacationing and soaking it all in, because that is what we all need to realize this is exactly what life is all about – SOAKING IT IN!
Swim Tuesday Slip and Slide using our old JOA posters Our trip delayed our traditional swim Tuesdays and the first one was no different from the last, AWESOME. Those that come, I am thinking, have no idea what it means to be present for JO and for all of us to build memories. As simple as it may seem to sit by the pool for a few hours a week, the fellowship, laughter and joy that is spread can’t be replaced by any video game!
Well, I certainly hope I captured your attention in these first few paragraphs because this update will most likely be the longest yet. If you have not figured it out, I try very hard to be short and sweet. Well the short part is absolutely out on this one ~ so grab 5 minutes and honker down because if you stop reading you will miss A LOT! I hope I can keep you at the ‘sweet’ part!
Well, I certainly hope I captured your attention in these first few paragraphs because this update will most likely be the longest yet. If you have not figured it out, I try very hard to be short and sweet. Well the short part is absolutely out on this one ~ so grab 5 minutes and honker down because if you stop reading you will miss A LOT! I hope I can keep you at the ‘sweet’ part!
Picnic in the Park ~ Saturday 7.27.13
I can’t believe this is our sixth Picnic in the Park. We were honored this month to be the feature article in the North Royalton Life Magazine July addition. We had the opportunity to share the history of our picnic and that only 6 years ago was the first time we were overwhelmed with your support! Please consider joining us at German Central on Saturday 7.27 we have fantastic food, music, games and amazing raffles. Most important, it is free to attend! Please share the poster with everyone you know!
We of course count on our volunteers to make this day a smash, please sign up at our volunteer page by 7/10 ~ click here
I can’t believe this is our sixth Picnic in the Park. We were honored this month to be the feature article in the North Royalton Life Magazine July addition. We had the opportunity to share the history of our picnic and that only 6 years ago was the first time we were overwhelmed with your support! Please consider joining us at German Central on Saturday 7.27 we have fantastic food, music, games and amazing raffles. Most important, it is free to attend! Please share the poster with everyone you know!
We of course count on our volunteers to make this day a smash, please sign up at our volunteer page by 7/10 ~ click here
We plan to put baskets together on 7/5, 7/6 and 7/7 ~ and we need help. Please email me at [email protected] if you can help! It is quite a production assembling all the generous gifts from Northeast Ohio and beyond. Any help is much appreciated!
Please click this poster to download your own to share with everyone you know! We love your support so share it!! Thanks
Please click this poster to download your own to share with everyone you know! We love your support so share it!! Thanks
Check out this auction item in the making, Owen’s Choice “Road Runner” Each year, Brad Falkinburg of Falkinburg Decoy’s creates Owen’s favorite bird and auctions it off at the picnic. Owen’s Aunt Dee has been in competition with Owen’s Uncle Ward each year for Owen’s Choice… so bring your dollars because the bidding gets pretty high for these select pieces!
We will post our auction items in a few weeks, so stay tuned.
We will post our auction items in a few weeks, so stay tuned.
Wanna Run 600 Miles?
We did! 5.19 our Moving Spirit team ran over 600 miles collectively at the Cleveland Rite Aid. Each step brought us $20,000 closer to a cure! So exciting that Evan Rosberil (9) and Pat Dailey (um well we won’t tell you his age) are the 2013 Moving Spirit Heroes. Please check them out at our Heroes Page.
We were thrilled to give our money raised from this run to PPMD specifically for cardiac research for our Duchenne boys, to learn more about where our funds went, click here.
We did! 5.19 our Moving Spirit team ran over 600 miles collectively at the Cleveland Rite Aid. Each step brought us $20,000 closer to a cure! So exciting that Evan Rosberil (9) and Pat Dailey (um well we won’t tell you his age) are the 2013 Moving Spirit Heroes. Please check them out at our Heroes Page.
We were thrilled to give our money raised from this run to PPMD specifically for cardiac research for our Duchenne boys, to learn more about where our funds went, click here.
Ok how about 52.4 then?
Elsa Kilbane and Brandi Rucinski will represent JOA in the Chicago Marathon through PPMD Run for our Sons on October 13, 2013. If you recall Elsa ran the Akron Half Marathon in September 2012 and is our JOA Hero, she recruited Brandi for the Chicago and now we have two lovely soles kicking it for JOA! We so love both of these sweet Marathon Mom’s that inspire us to keep moving for John Owen and to derail Duchenne!
Elsa Kilbane and Brandi Rucinski will represent JOA in the Chicago Marathon through PPMD Run for our Sons on October 13, 2013. If you recall Elsa ran the Akron Half Marathon in September 2012 and is our JOA Hero, she recruited Brandi for the Chicago and now we have two lovely soles kicking it for JOA! We so love both of these sweet Marathon Mom’s that inspire us to keep moving for John Owen and to derail Duchenne!
Joe Vasil Burning River 100 Miler
So do you all remember the Energizer Bunny? Well, guess what? JOA has their own official Energizer Bunny in Joe Vasil… he really never quits. His mission is to clearly derail Duchenne each step at a time.
I certainly know John Owen has affected his life tremendously. And if you know Joe, you know he is an avid runner. I am sure I am stepping outside the boundaries by sharing with you what I think about Joe and Duchenne…. I feel that Joe was profoundly affected by Mitchell Jones (10) and his passing early this year, I think, Mitchell’s passing pressed that panic button (that most of Duchenne parents know to well) in Joe. But the thing is, Joe is NOT a Duchenne Dad. Yet he feels it. Some how God has reached in and grabbed this man’s soul with the sense of urgency to cure Duchenne just as if JO was his own son.
So do you all remember the Energizer Bunny? Well, guess what? JOA has their own official Energizer Bunny in Joe Vasil… he really never quits. His mission is to clearly derail Duchenne each step at a time.
I certainly know John Owen has affected his life tremendously. And if you know Joe, you know he is an avid runner. I am sure I am stepping outside the boundaries by sharing with you what I think about Joe and Duchenne…. I feel that Joe was profoundly affected by Mitchell Jones (10) and his passing early this year, I think, Mitchell’s passing pressed that panic button (that most of Duchenne parents know to well) in Joe. But the thing is, Joe is NOT a Duchenne Dad. Yet he feels it. Some how God has reached in and grabbed this man’s soul with the sense of urgency to cure Duchenne just as if JO was his own son.
How do you follow that with words? Not only do we sense Joe’s commitment to John Owen ~ he has stepped up to do what no one has done for him ……. EVER.
Joe will run 100 miles in a row (yep, straight, no stopping, no sleeping, just running @30 hours or so of RUNNING) for John Owen and to derail this horrific muscle killer that is stealing our baby every day away from us.
July 2014
You can be there. It is a Cleveland run ~The Burning River 100 . We can all take shifts and run with him, chat with him, cheer him on or provide pocket and prayer support.
Joe Vasil
A hero like none other.
Joe will run 100 miles in a row (yep, straight, no stopping, no sleeping, just running @30 hours or so of RUNNING) for John Owen and to derail this horrific muscle killer that is stealing our baby every day away from us.
July 2014
You can be there. It is a Cleveland run ~The Burning River 100 . We can all take shifts and run with him, chat with him, cheer him on or provide pocket and prayer support.
Joe Vasil
A hero like none other.
7.17.1.3 Jett Riders
On the heals of one amazing athlete, we move to many. Teens that give up their summer to ride their cycles across the country to raise awareness for Duchenne! We are so blessed to welcome them into our home on 7.17.13 where we will have a BBQ dinner (please come and do let me know if you can make it we will eat at 6 and all are welcome to cherish these young souls) and send them off to their next stop on Thursday morning.
These kids ride all of July stopping each night at churches or any place that will welcome them from MN to NJ. Occasionally they are lucky enough to land a Duchenne Family that will provide a bed and a meal. They ride selflessly to raise awareness and funds for Duchenne.
If you would like to day ride with them, check out our JOA Jett Ride page
On the heals of one amazing athlete, we move to many. Teens that give up their summer to ride their cycles across the country to raise awareness for Duchenne! We are so blessed to welcome them into our home on 7.17.13 where we will have a BBQ dinner (please come and do let me know if you can make it we will eat at 6 and all are welcome to cherish these young souls) and send them off to their next stop on Thursday morning.
These kids ride all of July stopping each night at churches or any place that will welcome them from MN to NJ. Occasionally they are lucky enough to land a Duchenne Family that will provide a bed and a meal. They ride selflessly to raise awareness and funds for Duchenne.
If you would like to day ride with them, check out our JOA Jett Ride page
The Fellowship just never ends….
Owen’s best bud at school was nominated for an Every Day Saint Award for how well he sticks by Owen’s side and takes care of him every single day! When Owen read the nomination letter there was not a dry eye in the house ~ what a blessing he is!
We had a blast with all the end of year Homework Burning School parties! We just so love our St. Albert the Great Families ~ built awesome memories.
We received a donation from our St. Albert the Great Sixth Graders. They participated in an "EconoMart" to end their Economics unit. The students made and sold items and donated their profits! How amazing that this group of kids selected JOA to donated their profits to! Thank you again to the never-ending fellowship that constantly pours out of our community!
Even the Bisler Family and the Schultz Fam got into the JOA spirit by both donating profits from their Lemonade Stands to JO. I really can’t tell you what it means to have these beautiful souls selflessly give to your child. Shows that there is so much more good in the world than bad!
Owen’s best bud at school was nominated for an Every Day Saint Award for how well he sticks by Owen’s side and takes care of him every single day! When Owen read the nomination letter there was not a dry eye in the house ~ what a blessing he is!
We had a blast with all the end of year Homework Burning School parties! We just so love our St. Albert the Great Families ~ built awesome memories.
We received a donation from our St. Albert the Great Sixth Graders. They participated in an "EconoMart" to end their Economics unit. The students made and sold items and donated their profits! How amazing that this group of kids selected JOA to donated their profits to! Thank you again to the never-ending fellowship that constantly pours out of our community!
Even the Bisler Family and the Schultz Fam got into the JOA spirit by both donating profits from their Lemonade Stands to JO. I really can’t tell you what it means to have these beautiful souls selflessly give to your child. Shows that there is so much more good in the world than bad!
Kilbane Kids Training for the Iron Horse Bridgestone Tickets
Great blessing to have the opportunity to benefit from those that love to golf! If you are attending the Bridgestone August 2013, please consider buying tickets through JOA! Click here and use the code BALL13.
9.15 Iron Horse Ride
Our First Cycle in September is right around the corner! We were so inspired by the Jett Riders that we decided to do a cycle race this year! Board member Jennifer Briese is coordinating our first ever bike event on Sunday September 15 so plan on joining us for a Sunday afternoon of good times as we derail duchenne on pedal at a time!
Register now for an awesome Sunday morning ride followed by a picnic lunch (all are welcome to attend the lunch) to celebrate this great event! Click here for all the info
Great blessing to have the opportunity to benefit from those that love to golf! If you are attending the Bridgestone August 2013, please consider buying tickets through JOA! Click here and use the code BALL13.
9.15 Iron Horse Ride
Our First Cycle in September is right around the corner! We were so inspired by the Jett Riders that we decided to do a cycle race this year! Board member Jennifer Briese is coordinating our first ever bike event on Sunday September 15 so plan on joining us for a Sunday afternoon of good times as we derail duchenne on pedal at a time!
Register now for an awesome Sunday morning ride followed by a picnic lunch (all are welcome to attend the lunch) to celebrate this great event! Click here for all the info
Picture of Owen's bones.... creepy and cool How are we doing?
On every given day, we will say great. Because that is who we are. We are lucky, we are great, we are blessed, we are here.
Does not change the fact that on every given day Owen gets weaker.
Muscles
Strength
Gosh, I hope not, but Spirit
We had our first full body bone scan (Dexa scan) last week. I did not hear anything until a few days later - so in my mind were golden. ‘Ah, yeah, this is Duchenne Jen, nothing is golden here’, bone loss (and I have NO idea what a -2 means, good bad or indifferent) the extremely rushed doctor’s voice on the other end of the voice mail clearly was not going to indicate good bad or indifferent in rattling off the results… but all in all it is still a decline.
On every given day, we will say great. Because that is who we are. We are lucky, we are great, we are blessed, we are here.
Does not change the fact that on every given day Owen gets weaker.
Muscles
Strength
Gosh, I hope not, but Spirit
We had our first full body bone scan (Dexa scan) last week. I did not hear anything until a few days later - so in my mind were golden. ‘Ah, yeah, this is Duchenne Jen, nothing is golden here’, bone loss (and I have NO idea what a -2 means, good bad or indifferent) the extremely rushed doctor’s voice on the other end of the voice mail clearly was not going to indicate good bad or indifferent in rattling off the results… but all in all it is still a decline.
Men at work - The boys with our neighbor At times, it is so hard to keep a positive face because we know what the future currently holds. But we maintain hope in the break through therapies that are out there through GSK and Serepta. As of this writing, we have not heard from the FDA if they will approve Eteplirsen. But we maintain hope that what is to be will be.
We try so hard every day to be present for everyone we love, not just John Owen. Keep reminding ourselves to stop and enjoy the moment because that is all we really have. I often find my self reading our Heroes Page to keep me strong and inspired by the phenomenal people that give so much for John Owen and Duchenne. Then of course all I really have to do is look to my wonderful husband and three kids in that I am lucky enough to hear and know how much love there is between us. The list could go on as to how lucky we are with the support of our family and of course each of you reading this. I guess we have to expect the heartache with the joy, you can’t have one all the time (thank goodness for that!)
We try so hard every day to be present for everyone we love, not just John Owen. Keep reminding ourselves to stop and enjoy the moment because that is all we really have. I often find my self reading our Heroes Page to keep me strong and inspired by the phenomenal people that give so much for John Owen and Duchenne. Then of course all I really have to do is look to my wonderful husband and three kids in that I am lucky enough to hear and know how much love there is between us. The list could go on as to how lucky we are with the support of our family and of course each of you reading this. I guess we have to expect the heartache with the joy, you can’t have one all the time (thank goodness for that!)
We hope you will stop by one swim Tuesday to say hi. We certainly hope you join us on 7.27.13 for our biggest event this year.
And finally, we hope that you get to really get out and start living, stub a toe, cry, laugh, live!
God bless you and much love,
The Dumm Family
xoxoxoxox
And finally, we hope that you get to really get out and start living, stub a toe, cry, laugh, live!
God bless you and much love,
The Dumm Family
xoxoxoxox
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