So tonight, I am hearing the best music I have ever heard in my life.  It is simple, it is random, it is hysterical, and it is the sweetest sounds…. The boys are on the Wi downstairs (usually it is xbox) and the music is them playing together, laughing, bantering, cheering.  Lately for some reason I have forgotten that this is in fact music.  Music that many don’t get to hear, music that many tune out… all the same ..... music.  And tonight, I found that piece inside me that shook me a little and said… “Come on listen…. You will love it.”

I think the deafness must have had something to do also with my bout of writers block, in that I just haven’t had it in me to write to you all.  But the music, it just inspires me…. So here comes the joy, craziness and life in general that has been happening since July in this Duchenne household.

Dreams...

They say that your dreams are the pathway to your soul…I know that my brave momma just had some funky dreams when she went under the knife for a quick ankle repair, but the vividness and fear the dreams placed in her (perhaps pain killer induced) just struck me and took me quickly back to Owen, a few morning’s ago when he shared a rare remembrance of his dream. 

He was chasing a deer.

I asked him if he was running in his dream. 

He said yes.

So innocent, so profound,
“Yes, mom, I always run and walk in my dreams.”


What a strange reality for him, I guess for anyone that has certain things robbed from them, to feel the warmth and joy of a dream and wake up realizing that physically it is impossible.  It makes my heart crave to make the impossible possible for him.

Not saying that the possible is impossible, we certainly are not there yet. 

Wade put it so eloquently a few weeks back when we pulled into the family cabin in PA, Friday night, about 9:30 pm… there is nothing like pitch dark, PA night skies.  You can see the stars like nowhere else on Earth.  But the thing is as you pull in and get settled in, you are surrounded in blackness, though black, it certainly is beautiful.  What he said, I think will stay inside my soul for decades to come….

As we got unpacked and settled in the cabin, he said, “We aren’t really here until we can see it in the morning.”  Obviously, we clearly were in Pennsylvania, seriously, we were ‘here’.  But to him, we weren’t because he could not see the familiar bon fire pit, creek, pond, rolling hills and trees, until he could see it in all of God’s glorious sun rising splendor, we were ‘not here yet.’

I guess mixing the dreams of running and the blackness of ‘not there yet’ makes it difficult to buy into the results of our recent visit to Children’s Nationwide Hospital this August, maybe parts of impossible can become real….. in that through the confusion of the rattled visit and the follow up between PPMD, Dr. Mendell and us, the nurse stated “Dr. Mendell will do everything he can to get you into the study.”

Yes, that study.  The one we signed and signed and signed urging the FDA to push forward.  That Study.

Though the dates of the kickoff are not in stone, in fact they have fluctuated depending on who you talk to.  The point being, there is this layer of hope out there that we did not have before.  There is the pending sense of sunrise just waiting to burst over God’s goodness to show us, “Yes, you are here.”

But in reality, we are not here yet, so dreams, for now, chasing a deer, running his sweet little heart out… that is mine and I know you will all keep on praying we can make this a reality.

So….. What can you do to get us closer to the ‘here’? 

JOIN US……

Join us, will you? In our last JOA event this year, Iron Horse Bike Ride on 9.28.14.  It is such a beautiful way to bring in the Fall with a variety of bike ride distances through our amazing Metro parks.

Please sign up at

Iron Horse Bike Ride

Simple way to spend the day Derailing Duchenne……

Burrr…….

We have been so overwhelmed by the ALS Ice Bucket Challenge – in fact, thrilled that ALS is taking center stage to this gig in that so very many have taken on the challenge and that ALS has received so many donations.  You see, to us, ALS is very similar to  Duchenne… and we are so grateful that this amazing awareness to this brutal muscle killer is like wildfire….. so keep the ice cubes coming!!!!!!

Our Ice Cubes

Our Vice Principle, Mrs. Polowyk took on the challenge at the call of our St. Albert the Great 8th Grade Football team, and dumped her head in ice for John Owen and all our boys trying like mad to simply lift a limb to brush, eat, wave or really just live in the face of this muscle killer.  Today, the team made John Owen an honorary member of the St. Albert Varsity Football Team and every yard they gain is for him!

It is just beyond amazing that the “Cold Water Challenge’ for JOA started from an amazing soul in Trevor Knerium, and from that sparked so much awareness!!! Thank you to all that took the challenge and for those that have not been called out yet…. LET’S DO THIS…. Right???????????? NO MATTER WHAT YOUR CAUSE…. Do something to help us special needs families to feel your love and appreciation for our battle….

9.7 World Duchenne Awareness Day

It was an inaugural day for Duchenne in that the 7th of September was declared World Duchenne Awareness Day.  In the video below, you see our family (well not really us) but in that every day in the life of Duchenne eventually, one way or another, is exactly the same for all of us Duchenne families….

We had an amazing summer!  So many spirits out to help us derail…

On Base for Duchenne ~ Impact Team Sports 11 U Lumberjacks spent every on base for Duchenne this season raising awareness and funds to help us derail.  We are already on their queue for next year.  What an amazing blessing these boys are!

Moving Spirit ~ Hundreds of miles were run in honor of John Owen and taking down Duchenne in our Rite Aid Cleveland Marathon Moving Spirit Team.  Many of us will continue on to the Marine Corp Marathon in DC in October to honor the 3/25  49 Fallen Marines from one unit in 2005.  This spirit of this running team is simply amazing.  Blessed beyond words by the fellowship and love this group has created and spread.

Picnic in the Park ~ Again a record year with over $30,000 raised in research funds and more importantly an amazing family oriented event bringing nearly 2,000 NEOH people together.

Golf for JOA ~ Tom and Becky Hudach made par on this baby!  We had a blast at the first Golf for JOA in August and are in awe of their dedication to help our son through this great event!

100 Miles

Um, yes I said 100 miles.  Not Driven, Not Biked, Not mapped out on a GPS…. But run.  In a row, no stopping for 28 hours by some crazy, awesome JOA loving guys, Joe Vasil and John Farinelli.  The first weekend in August they ran 28 (ok maybe close to 29) hours straight for John Owen and our boys to Defeat Duchenne. 

It is so hard to describe how you feel about someone that takes countless hours in training for 18 months for this one weekend to just never stop….. kind of reminds me of the antithesis of Duchenne in that Duchenne is bad… these guys are good … but the common link… NEITHER STOP.

Wow – Thank you is not enough.  As you know, Joe has been a JOA Hero for some time and no officially his running mate has earned the 2014 JOA Hero of the Year! 

Nothing in this world beats the support of genuine hearts when you are most in need.  Love your neighbor…. Right?  Well these two have paved their treasures in heaven for sure!!

2014 JOA Hero… John Farinelli
















"Some thoughts on the BR100

I have to start at the beginning.... "In the beginning ....” Jen invited me to run with the awesome JOA group of runners, and Joe Vasil was my coach, and all was good! How appropriate to train for an entire year with Joe leading the way. Looking back, the training was at times grueling, especially during the cold winter, and those intense back-to-back long summer trail runs. I truly thank my family for taking on so much at home to cover for me while I was gone. The time committed was something I really underestimated. As many of you know, I was not the most confident in my expectations for much of my training. How could I actually run 100 miles in a little over a day, when I had not even run 60 miles in an entire week? Even towards the end, I was plagued by this lack of confidence. The last week before the race put an end to this with an amazing out-pouring of cards, notes, packages, thoughts, and especially prayers. I still remember going to pick up my race bib the day before the race and seeing those words, "for JOA" - that put any doubt I had before to rest. The day of the race, the first 50 miles seemed to fly by. The second 50 were some combination of self-determination, and not wanting to let anyone down who had encouraged me that week before. Somehow, this was the magic formula (along with a great crew and pacers), to carry me the second half.

Looking back about 3 weeks later, I learned how important support from others was to meeting this goal, and that I need to carry this forward in whatever ways I can. Secondly, I'm constantly reminded of the words of Fr. John Viall when he said, "always remember to pray", anything is possible with God. Third, I will always be in debt to my family for giving me the time to train for this, and now it's time for me to support them as unselfishly as they supported me."

                                                      John Farinelli     8/27/14

The Boys….

They had an awesome fishing trip with our friends, The Henegar’s this past weekend.  They caught over 200 perch between all of them and the just had a blast being on the boat!  They are doing great and adjusting to the routine of school.

God bless you all as you enter into this awesome time of year, preparing for Holidays, family time, and pure joy.  Know that we love you and count on every inch of your support and more so, treasure it…..

Let’s all wake up tomorrow and be ‘here yet’

We wanted to leave you with the very amazing words written by our friend and board member, Mike Mysliwiec…..

Duchenne Mom

Sunrise, a beautiful day. Duchenne
Call from a friend, lunch date. Duchenne
Laundry, cleaning, oil change. Duchenne
Dinner, homework, bedtime. Duchenne
Charge the wheel chair. Duchenne
Doctors appointment. Duchenne
Medications. Duchenne...
Stop this ride I want to get off!
But I can't, my sons life is at stake!
God help me get through this day.

Mike Mysliwiec
8/24/2014

Looking at this photo from 2008 brings me so many emotions it is uncanny.

The support, overwhelming support of friends and family in our North Royalton community is one that just screams out in this picture as Jack Dailey, at that time a recent Kindergarten Graduate, hosted his first JOA Lemonade Stand that brought in $500 for our newly formed nonprofit, John Owen’s Adventure, Inc.  His quote is on the back of our brochure and will always be there.

Innocence, right?  Six short years ago, all four of them enjoying the carefree life of youth.  Oh, I miss that look in their eyes.

Strength.  The strength to stand shoulder to shoulder with those that will never ever leave you even when that strength to stand diminishes.

Pride.  See the pride on Jack’s face?  He knows in his heart, he’s got this!

It is so hard to explain our gratitude and at the same time it is so hard to explain the moments of sadness.  But one thing is certain, we will continue to push full steam ahead and not stop at any time because Duchenne doesn’t stop.

I love this picture.  Wade as a baby, Rutger with his pal and Owen standing. 

Always, with every second we get with our boys, I want to freeze them, bottle them up and never let them grow or change from this point on.  Impossible, but I am sure every momma out there wants that too.

Thank you Jack Dailey for your relentless pursuit to derail for your friend… “Please come to Jack’s lemonade, pop, Juice Box & Chip Sale!  Everything is $1.00.  All money goes to JOA.  Please pay a little more money for John Owen.  Thank you, Jack.”   …….. xo

I am sure Jack will agree, we now have a little bigger lemonade stand for you to hit – July 19, 2014 Picnic in the Park!!!!

We are in full Picnic in the Park full swing.

It is always a great time in that we can celebrate the generous spirit of our community and take a pause to realize what we are all about. 

We are about today.  Whatever you have to offer today, we will take that.  Be it a good thought, a simple prayer or a smiling look up to the heaven’s as we ask all we know up there to shine their mercy down on us with a simple breeze.

Picnic in the Park 7.19.2014  - always I go into it feeling Epic always walk away from it feeling humbled.

We have assembled 100 baskets so far, with the second basket assembly day planned for 7.11 as we continue to receive great donations in our meager attempt to derail Duchenne.

We still need your help!  We will welcome donations until 7.10.14.  Please contact me at jen@joainc.org and we need help the day of – simply sign up at our JOA Site.  THANK YOU

SUPERHEROES

We have John Farinlli and Joe Vasil ready to run 100 miles in a row on 8.2 for John Owen… check them out…. Think about how this would make you feel to have someone spend every weekend of 2013 and 2014 (not counting their weekday runs) running 26 to 50 miles to train all for your son…… Words can’t explain……

Golf fore JOA is Monday, August 4th, 2014 11 am at Windmill Lakes Golf Course, Ravenna OH so blessed by Tom and Becky Hudach who are not only sponsoring this event but running it for John Owen!  We hope you will consider this great Golf Gig!!!!  Click on the picture for the flier!

Just last week we sent $25,000 to Parent Project Muscular Dystrophy from our combined efforts of Dodgeball, JOA 5k 10 Camo Run and our Moving Spirit efforts.  To know that our hard work and efforts are making a financial impact on Duchenne means more than any of you may know, but as a momma that wakes up daily with the thought of Duchenne heavy on her brain and heart, it means my world.

So thank you from our little tiny world in the corner of Bunker and State North Royalton OH as we prepare for yet another Epic Picnic in the Park.

We are within reach to change Owen’s life.

Are you on board?  Silly question, because we know you are…. Looking forward to seeing you on 7.19 and know another update will come soon

God bless you

The Dumms

I have been putting off this update for some time now, I know I have told you I would write sooner but the truth is I am struggling with how to share this ‘good news’ I have been promising.  The hard part of this news is that I myself am having a very hard time believing it.  And as most of you know, Tony and I are pretty positive, upbeat people, so being pessimistic is just not our style… hence the procrastination.

So, the FDA has officially committed to working with Sarepta or at least backing the efforts of Sarepta and their exon skipping drug Eteplirsen.  To refresh your memory, two years ago we started the letter writing campaign to the FDA to back this drug as it is one that shows complete promise and proof that our boys can benefit.  The First time the FDA gave the nod, we rejoiced

Then they pulled the rug right out from under us and reversed their support.

So, here we are in May 2014, with the recent news that the FDA again has given their support with talk of going to market 2015….

You can see why I am skeptical.

The ‘good news’ is – by the end of the year Sarepta will initiate a safety study of this drug for children that are no longer walking, yes that is Owen.  Originally, they were ONLY going to test on ambulatory (walking) boys.  (This is the same study Owen would have been involved in had he still been walking on his eight birthday.) Through the amazing voices of some incredible moms that I know you have seen on Facebook and in the media, they were able to get this study also ‘agreed to’ as a legitimate study.  We will do what we can to sign up for the study….. so….

Perhaps by October of this year, Owen will receive weekly infusions of the drug that can change his life.

Wow, talk about hope dangling like a carrot in front of Tony and I.  So hard to grab that carrot because it has ‘been there before.’  But even reading this sentence above, makes my heart stop and my eyes well with tears in the possibility that we can change his life.

And simply, none of this could have been possible without you.  From the start of our diagnosis, the support, the love, the prayers, from the $1.00 raised by selling lemonade or the thousands raised by running miles, to the voices raised and heard.  None could be done without you.  So maybe that is why this is so hard, because come October and if there is no study, simply I feel as if we let you down, we let us down, we will let him down……. So prayers that will not happen.

With that, we still have lots of celebrating to do yet this year, so why don’t we get to it?

Picnic in the Park 7.19.14

Once again we will bring thousands of souls together for one great night of family fun and entertainment to German Central in Parma, Ohio.

Several new bands this year will keep you on your feet dancing;  Victory Highway, Natalie Kulka, Three Pews Down and our original favorites, The Polka Pirates.  We are changing up the menu this year with Mama Mias Foods providing sausage sandwiches (100% proceeds to JOA), DQ (also 100% to JOA), our amazingly Famous Dave’s and Fire Truck Pizza Company. 

We got the fun and games covered with basket raffles, 7-11, kids and adult games. 

We NEED you to volunteer and we absolutely need basket raffle / silent auction items ~ Volunteer via our Volunteer Opportunities Page.

We would love to accept your donation of any size to be included in a raffle basket or if you have a theme basket in mind, we will take it!  Please let us know by July 1 how you can help us.


Download this poster (click on it) and this pledge card and share with your boss and workmates!  As always, the success of this picnic comes from you, our amazing supporters!!!

On base for Duchenne

As you know the Impact Team Sports Lumberjacks are raising awareness and funds every time they get on base this summer during their 11U Travel Team adventure!  We are so grateful for their dedication to making each hit about Duchenne and literally hitting it out of the park.  These ballplayers earn pledges per base they earn and each game a Duchenne Player of the Game is recognized, so far we want to congratulate these great players:

Duchenne Players of the Game:
Harborcreek- Binger
KC Storm- Miller, Lobianco, Labanc, Kidd, Hammer
Stallions Blue- Binger
Cyclones- Binger, Labanc, Lobianco, Sheddy
N. Ridgeville- Kidd, Miller, Morgan
Bat Cage- Labanc, Morgan
Premier- Binger, Labanc, Morgan, Lobianco
Rocky River- Carocci, Lobianco
Fairview- Binger, Carocci
Stallions Blue- Binger, Hammer
Miners- Binger, Cora
Stallions White- Cora

Coach Franks shared his joy with this program, “Just that I am very proud of the amount of money raised and more importantly the awareness that the entire team has raised.  The banner goes up every game.  I had two parent groups ask tonight at the facility about how they could donate...”

It is an amazing blessing to have these young men going to bat for Owen.  Go Lumberjacks!

Team 100 Mile Miracle - Defeaters of Duchenne MD 8.2.14

It is amazing how the spirit of one can light so many.  We have the framed Elevator Pledge still proudly displayed in our kitchen.  I get to look at it every day and recall the thousands of blessings one spirit created for our family.  It is that spirit again that keeps strong as, Joe Vasil, once again does amazing things to help our son, like none other. 

Except this time he is not alone!  Joe Vasil and John Farinelli will run 100 miles in a row at the Burning River 100 on August 2, 2014.  One spirit, one light, one very long path.  Please share their journey through prayer and pocket by visiting their site. Their goal, $10,000 and to still be able to walk after the race…. We plan on setting a support schedule, so stay tuned!

Golf fore JOA 8.4.14

It is so hard to believe that even more can come out of JOA, yet is has!  We are excited to bring our first Golf Tourney to you on Monday, August 4, 2014.    For all you bosses out there, treat  your hard workers to a foursome and a day in the sun for this great cause.  Those that can join us please do it is at the beautiful Windmill Lakes Golf Course shotgun start at 11 am.  Please visit the amazing site that Becky and Tom Hudach (our hosts) put together for this very special even!

Moving Spirit


The weekend of May 18 was amazing!  We had 55 soles running for our sweet soul mate, John Owen at the Cleveland Rite Aid!  Saturday we did the 5k with many first time runners and what a great time I had running with Rutger for the first time, he did amazing! 

Sunday we set out for race day and were overwhelmed by the perfect running weather!  It is amazing how fast this journey went as we trained weekly to run our distances – I have to have Owen figure out exactly how many steps we took together as a team that weekend.  Thank you to the many supporters that lifted our spirits through your generosity in prayer and pocket!  We can’t wait to do it again!

JOA 5k/10K Camo Run

What a great time we had at our JOA 5k/10k Camo Run 5.3.14 ~ 168 participants what a blessing! 

John Owen said he will take part of the race next year - so start training now if you plan to beat him - he is very fast in his wheelchair!

I am still in AWE over the weather God provided for us!  The last medal was hung and the rain began to fall as did the temps.  God provided an amazing race morning for us - how thankful we are for that!  And for each one of you.  We hope you had fun!

Congratulations to our Top Finishers: 5k - Alex Stopar 18:22 and Elise Chojnacki 21:45 10k - Greg Strnad 44:22 and Karen Keaton 48:46

Just before Sunrise will have race photos up this week - keep checking her site for info www.justbeforesunrise.com.  Maria will donate 50% of all profits from race photos purchased - so generous!

Thank you to our awesome Volunteers - we could not have done it without you!  John Owen is so lucky to have your dedication in his life as are all our boys that struggle daily to do simple things like brush their teeth - THANK YOU from the BOTTOM of our heart!

Monica Bibyk
Jen Briese
Mary Ellen, Rachel & Morgan Dailey
Jen Dombek
Deb, Simon, Emily & Sophia Factora
Nicole  Gubecz
Amy  Irwin
Jenny & Rich Kern & Family
Elsa & Grace Kilbane
Sue Kruze
Crystal & Miranda Millner
Ray & Barb Muniak
Lauren Muniak
Kristy Neff
Carolyn Rice
Brandi & Rania Rucinski
Kim Wasielewski
Trinity High School

Special Thank you to our Sponsors
Wendy’s Medina
Carrie Cerino’s
DARICE - Ryan Kilbane
Goldsmith Jewelers
Jack Pearcy - Rockin it out on our Driveway
Just before Sunrise Maria Biel Photographer
Romano’s Farmer’s Market
Rossi and Romano - Rockin it at the Finish line
Kim’s School of Dance
Sweet CC’s
BullDog JakZ – Empire Health & Fitness
Aunt Rosie Kraska
Mrs. Janice Massey And give it up for North Royalton Police Department!

Summer… ahhhhh

The boys are doing well.  Everyday Owen loses strength but you can’t see it because his spirits are so high and simply all of us are very Happy.  Joy ~ right ~ that has to be what this journey is about ~ if it does not bring you Joy then it is not worth doing.  All of them are clearly joyous.

Wade is rocking it in baseball this summer, he is our sports kid, baseball ready and so fun to watch.  Rutger and Tony are bonding this summer with improving their hunting / shooting skills in a summer clinic and John Owen is thrilled not to have to go to school every day.  He will especially enjoy airsoft wars with his favorite summertime sitter, David.

We finished off the school year very well.  Hard to believe Rutger is hitting middle school but then again, he is ready and I guess at some point I have to admit he is not my little baby any more.  We are again just so grateful to get another summer together, to enjoy the slow pace, sunshine and the hope of weekly infusions to come in the Fall……..

Please join us this summer at our events, we’d love to see you, actually we need to see you for that catch up, hello and hug that we have missed….  but please most of all, don’t forget your Joy…. Carry it with you always!!!



Xoxo

The Dumms

Insurmountable……

I wonder what it felt like to be Thomas Edison and fail?

I wonder what would have happened if Abraham Lincoln stopped after his first stumble?

I wonder what Nike would have done if Michael Jordan just stopped instead of just did it?

What pains me the most is when faced with the insurmountable task that is in front of you and perhaps the over and over relentless beating you feel as a result of failure… the wounded that give up, give in and stop.  That is what pains me, the stop.

Now please don’t think I don’t get it – I know pain – I know suffering – I know weakness – I know the urgency to want it all to come to a crashing halt, let it be over and never look back….

But I know persistence when faced with the insurmountable task.

If I were to stop now and let Duchenne win, the failure would not belong to me, it would belong to my son.  I keep reminding myself of that – failure is simply not my option.  I absolutely know that failure has got to be part of the equation though, so at the same breath, failure is part of the option.  It is just not ‘the option.’

What do you do in the face of failure?  In the face of the insurmountable task that makes you think you will not move that mountain?

Are you part of the stop or will you get back up, dust yourself off and try just one more time?

God doesn’t give you the easy.  God gives you the test, He puts that mountain in the way and quietly whispers to himself, ‘now go move it.’ 

Oh if you listen, He will tell you how to move it.  Believe me, because I know.  But when you give up, when you stop, when you walk away and never look back, you simply missed out on that voice.

Hmmm…. Maybe now I get it?  Yes, certainly Edison, Lincoln and Jordan simply heard over and over the voice ‘now go move it’

Instead of the stop

Today - Go move your Mountain..............

Take a minute to help move John Owen’s Mountain and sign the petition at the Whitehouse to urge our Government to push Eteplirsen forward.  It takes a few minutes, but for a mountain, I think you will do it.  Thank you – click here ….. http://wh.gov/lEfaZ

 Then come back and finish reading our update!!! LOL!!!

 Our JOA 5k / 10k Camo Run (5k walk) is routed and ready to roll at 7:30 am on May 3!  We can’t wait to have the first 10k in North Royalton!  We will start at Carrie Cerino's on 8922 Ridge Rd. North Royalton, Oh 44133

Even if you are not running or walking it come out and line the streets to cheer these folks on!  We are still recruiting bands to participate along the route, if interested please email jen@joainc.org.  The route is a bit hilly and goes right past our house.  Owen and the boys promise to be in full Camo and will be hiding in the trees with the water hose ~ so be on alert!

Please show your support for this awesome race by visiting JOA 5k /10k camo run.

We are gearing up for the Cleveland Rite Aid the weekend of May 17 ~ we have 50 Moving Spirit runners / walkers ready to pound the pavement to derail Duchenne!  Please pray for our runners as we train weekly to get ready to run this awesome marathon!  If you have a running or walking bug – it is NOT too late to join us!  Visit Moving Spirit

On Base for Duchenne ~ Get on base to help us derail!  Impact Sports and The Lumberjacks have joined forces with John Owen and will dedicate each 1st base to John Owen!  You can sponsor a player or simply get on board by visiting On Base for Duchenne

We hope that instead of giving you the update on the boys – you will come on out to one of our great Spring events and check them out, catch up and grab a hug or a hearty fist bump from one of them (and of course us too!).

We are doing great, keeping that main objective of filling each day with joy and of course, listening for the ‘now go move it.’

I have no doubt we will…..

God bless you


The Dumms

Dodgeball is Back Baby!  
DODGEBALL 3.29.14 
Join  us for our Play for JOA!
Royalton Fieldhouse 10701 Royalton Rd North Royalton, OH  44133 
Let’s celebrate a Saturday afternoon and derail Duchenne Muscular Dystrophy as we just have fun in a dodgeball tournament - $5 entry fee Prizes for winners of each level
Age Group: 4 and under ~3:00 pm to 3:30 pm 
Age Group: 5  – 6 ~ 3:00 pm to 3:30 pm 
Age Group: 7  – 9 ~ 3:30 pm to 4:00 pm 
Age Group:  10 – 12 ~ 4:00 pm to 4:30 pm 
Age Group:  13 – 16 ~4:30 pm to 5:00 pm 
Age Group:  17 + ~ 5:00 pm to 5:30 pm 
All Play ~  5:30 pm to 7:00 pm 
Each  player must sign up individually via www.joainc.org click EVENTS select Play for JOA  Secure your registration by paying on line when you register or send your check
to:  JOA 
 5715 Bunker Road
North Royalton, Ohio 44133
Responsible adult must be present during event for all children  under 18 
Contact:  Amy Schultz 440 230-9486
Email  fame907@hotmail.com
 Visit Play for JOA

Today is an official Holiday in the Dumm household, Pajama Day. 

The day after Christmas is always spent in our jams, playing games, building Lego’s and doing nothing but fun.  The boys love Pajama Day! 

We hope your Christmas was fantastic!  We had a great Christmas filled with celebrating with family and friends.  Our joy continues as we will continue our Favorite Things of the Holiday though the New Year! 

We have had quite a year with the FDA, Sarepta, Exon Skipping and the carrot of hope dangled in front of all us. I wish we could tell you that there is progress behind the scenes on this drug.  We simply don't know which way the FDA is going these days.  There was a great forum on 12.12.13 hosted by PPMD which again pushed our cause into the laps of the FDA.  This effort has been lead by so many parents of Duchenne boys, it would be impossible to name them all.  But for each of them we are grateful as we are for you.  The fight to keep pushing our cure forward is paramount. Prayers continue in that the FDA heard us.  For more details visit PPMD.

As we move into 2014, there are many opportunities to stay on board the JOA train.  Easy ones and hard ones.  How about an easy one for you to start?



New Year’s Day - 100 Mile Miracle Run

Joe Vasil and John Farinelli (both St. Albert Dads) will embark in their training for the 100 Burning River Run in August.  We challenge each of you reading this to train with them.  Whoa, 100 miles you say ….. WHAT????  Oh it will be easy peasy.  We would like to have as many people as possible to join the 100 Mile Miracle Run. 

Here is the deal, starting New Years Day through July Walk or Run 100 miles (on your own) to support these amazing guys that will run 100 miles for John Owen all at once!  If they can run 100 miles for 30 hours straight, you certainly can grab 4 miles a week walking or running for John Owen. 

This is a progressive run and a great self paced event that will kick off at 10:00 am at Station Road Bride in Brecksville on New Years Day with our first mile.  We ask that when you commit to moving for John Owen, you ask for pledges per mile, track your miles and culminate the fun at the 100 Mile Miracle Run Party at the end of July!

You can sign up here or contact jen@joainc.org for more information.  Looking forward to making a few miracles with you soon!

Dodgeball March 29

Yes Dodgeball is back this year!  Check it out here and sign up for this really fun event.  It is a great way to get the Cabin Fever out of your bones.

Moving Spirit

You can’t stop our spiriters!  This year we have both a running team and a walking team!  Please check out our Moving Spirit Page to embrace the details.  The Cleveland Rite Aid has not been the same since our sea of JOA orange hit them last year!  Join us please for your walking or running legs to help derail Duchenne via the 5k, 10k, half marathon or full on 5.18.14.

Oh yea, if you are committing to the 100 Mile Miracle Run then just simply tag this on!  How easy will these miles look after four months of moving!!! 

How we doing?

We were so lucky to have one full month of early snow!  The boys got to do their favorite thing, Hillbilly Sledding already!  They have so much fun sledding with Tony through our yard, it is awesome! 

We are holding our own!   Great news in that Owen received his first fitted wheelchair.  He also finally got back into PT and we are seeing great things out of him with Merri-Jo.  His check ups for this year have been steady, no major declines and all major organs doing what they are supposed to do, Victory!

So excited to spend these last few days of the year with the boys, spreading the cheer in the birth of Christ and ringing in the New Year.

2014 will be an interesting year in that Owen will turn 10, Rutger 12 and Wade 8.  The boys are growing way too fast and with each passing year we look back and cherish the sweet memories we have.  We try so hard to live in each moment, celebrate today, rejoice in the second and not dwell in the future.

So our Christmas and New Years wish for you is that you hold today so deeply in your heart that it is filled with joy, Today.

God bless you, Merry Christmas and Happy New Year!!

Amazing Kick off to Fall for JOA

We experienced some pretty amazing Marathon Moms this Fall.  So in love with the steps Brandi Rucinski and Elsa Kilbane gave to John Owen at the Akron Marathon on 9.28 and the Chicago Marathon on 10.13!    Their steps and journey were captured on their respective blogs (click their names) but mostly their extreme dedication in their running journey has lifted our souls.  Thank you is not nearly enough of what we can offer to these amazing athletes.  Combined, Team JOA for Run For our Sons PPMD raised over $13,003.16.

We are so excited to cheer on Nils Antonio as another Marathon Dad sets the stage on Sunday 10.20 to rock Columbus, OH!  He has some pretty amazing marathon legs as he kicked it at the Atlanta Olympics as a marathon runner, now he is putting those calf muscles to the test in Columbus OH.  Please support Nils through prayer and pocket (click pocket) as he runs his first race after a major injury (that kept him out of Boston ironically).  Thank you Nils for your amazing heart and sole as you kick it for John Owen!! Xoxox

Walker … not a Runner?

All this running talk has helped me remember the big news!!  Moving Spirit officially has a Walking Team for the CLE Rite Aid 5.18.14!  Woot – so if you have legs and they work you now have no more excuses!! Join us via Moving Spirit.

Runners for Moving Spirit can also sign up at Moving Spirit– as the Moving Spirit team grows as does our mission to Derail Duchenne one step at a time!

November 2, 2013

What an awesome date!!  We have our Chili Cook Off planned with the huge hearts of the Federico Family at Country Stove Patio & Spa Noon to 3 pm!  Join us as a Chili Master or simply a taster ($10 at the door) to taste and judge the best Chili in North Royalton.
This is the second year that Country Stove Patio & Spa will open their doors to the JOA Fan club and of course all of North Royalton.  Join us – enter your chili here and mark it on your calendar and just plan to be there.  Your support for all our events continues to lift our hearts and deepen our strength in that we are not in this alone!!

Earlier that day, JOA will be at the North Royalton Health, Wellness & Community Expo at the North Royalton High School from 9 am to 12 noon!  I am so excited about this opportunity to be a specific part of wellness in Northeast Ohio.  Not just sharing our JOA journey but encouraging others to join our Moving Spirit Runner / Walker Team, Dodgeball Team, Iron Horse Cyclist or new this year Golf Team – YES I SAID GOLF!  We have so many amazing events to get you up off that couch and move in 2014!  Join us!

Thankful Hearts

It is a tad early to talk about Thanksgiving, but I am thinking this may be the last blog until the Holiday Season.  We just wanted to say that we are so thankful for our JOA community.  I have no idea how on earth I would be able to get out bed everyday were it not for you.

Thanksgiving is my favorite Holiday, in that it is all about family and traditions.  I tell you I am a stickler for traditions, I won’t even upload the IOS 7 on my I phone… too much change LOL!  We are just so fortunate to go into another Thanksgiving with your blessings surrounding us on a daily bases.  So Thank you, know we are grateful.

The boys are in the midst of Deer Season.  This means quiet weekend nights for me and whichever kid that is not in the deer stand and means amazing bonding time that Tony gets with our boys. 

Tony, Rutger and Owen just wrapped up their annual fishing trip in MI.  This was Owen’s first time (you have to be 9 to go!) and they caught some pretty amazing salmon.  They had an amazing time with Bill Briese, Uncle Bob and several others as they experienced pure Michigan.  I gotta tell you, this was a tough one for me.  Kinda like your youngest going off to K, right?  It was the first time I was away from Owen for so long.

Gosh that sounds horrible as if I am good with being away from the other boys (Tony included).  But it is not that, as his primary caregiver letting go was rough for me.  But I am so grateful I did and I think Owen was as well.  He did an amazing job and held his own on the trip.  I am so proud of him!

The boys are all doing very well in school.  We cherish every second we have at St. Albert the Great, we love our school family and they clearly love our boys.

Owen’s cardio and pulmonary check ups this Fall were awesome.  Simply God at work keeping him strong.....


Because I have no answers as to how he is above holding his own in both areas.  All I know is we are grateful for today, for the blessings we continue to receive especially from our friends and our family, from the steps that continue to stomp out Duchenne and the beautiful souls that fill those shoes, to our Chili connoisseurs that will pack the house on 11.2 at the Country Stove Patio & Spa.

Yep, we are thankful

My favorite song regarding Duchenne is “A little bit stronger…” by Sarah Evans. I know I wrote about this song before and still every time I hear it, I think about Owen’s attitude in trying to fight this beast….

“Doesn't happen over night, but you turn around and a months gone by,
And you realize you haven't cried.
I'm not giving you a hour or a second or another minute longer.
I'm busy getting stronger.

And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
And ohhh
I'm done thinking, that you could ever change.
I know my heart will never be the same,
but I'm telling myself I'll be okay.
Even on my weakest days, I get a little bit stronger.
I get a little bit stronger.”

I hear it and it is so hard not to cry but I have to remember I need to be stronger for Owen and that right now is the most important job I could ever have.  So I do it, right?  Just a little bit stronger.

You help me a lot with that. 

We are rounding into Fall and before you know it we will welcome 2014.  With 2013 almost over, we can say it has been one of the most successful JOA years yet.  Together we have put over $50,000 into the hands of PPMD and we have another possible $10,000 to add to that with the next few events.  With each dollar, with each person made aware of JOA and the beast we call Duchenne, Owen DOES get a little bit stronger.  Certainly, you have made our fight amazingly Strong.

So … on to the Strong….

You may know Brandi Rucinski and Elsa Kilbane are using their sweet calf muscles and more to run marathons for John Owen!  So far they have raised tons of research dollars as well as many new supporters along the way.  Elsa is running the Akron Marathon 9.28.13 and she and Brandi will run the Chicago Marathon (2 weeks later mind you!) on 10.13.13.  Click their names to get their story.

Help us honor these super hero marathon moms by attending dinner with them on Tuesday 9.24.13 at Bella Amore 6031 Royalton Road, North Royalton 44133 where 20% of each check will go towards their research dollars to PPMD.  Click the flier to download it and share!

Mostly we ask that you support these ladies through prayer as you can imagine running for 4 hours straight will take its toll on you!

I am super excited as I get to run the 1st half of the marathon with Elsa on 9.28!  I am running a dual cause, for JO and for our friend Ruth Crane’s  non profit, Ears to You giving hope and joy to cancer patients.  If you can support me through prayer and pocket it would be much appreciated!  Please click here to learn more!

Iron Horse Bike Ride

We had an amazing turn out for our inaugural bike ride on 9.15.13.  We will certainly do this event again and as usual it could not have been done without the dedicated and awesome volunteers we have in our friends and family!  If you missed it, you missed a great family, fun event.

Chili ~ yeah I said Chili!

Fall is the best time for Chili as well as visiting the cozy atmosphere of Country Stove, Patio & Spa!  The two go together now for the second time like peas in a pod thanks to the generous hearts of the Federico Family!  They will host the Chili Cook off on 11.2.13 from 1 to 3 pm and again this year all proceeds will benefit JOA!

If you are a Chili Master or a connoisseur please plan to attend this great event!  Tickets are $10 at the door, $5 for kiddos for tastes of the best Chili in North Royalton.  Any Chili Masters can enter their chili via http://www.countrystoveandpatio.com.

Hope to see you there!!

Latest on FDA and the boys….

As per our last update, the FDA gave the nod to Sarepta (the makers of the 'drug') to apply for a NDA or New Drug Approval in the ‘first quarter’ of 2014.  So we anxiously await what 2014 will mean and if in fact we will see the drug that can save his life….

We did get some disappointing news about one of the trials for exon skipping at GSK.  But we continue to hold strong, we are ready for the future, whatever it brings.

The boys started school last month and it was one of the more difficult school starts in that we just couldn’t get summer out of our skins!  But now that Fall is officially here we just don’t have much choice.  We are thrilled to pieces with the tender loving care that is provided to all three at St. Albert the Great.  Rutger is in sixth grade and it is impossible for me to admit our oldest is in ‘middle school’.  John Owen is soaring in fourth grade with Mrs. Massey and Wade is doing great in First Grade with The Amazing Mrs. Beskid.

The older boys are looking forward to their annual fishing trip with Tony next month, while Wade and I get to spend some time alone! 

We hope you can make it to one of our Fall events, just so we get to see you, chat and catch up.

I gotta tell you, this Duchenne stuff, it is so hard. 

I mean we are used to the day to day – not that by any means it is easy and Gosh not that by any means we are Martyrs. 

But it is the curve balls that are the toughest, the one or two people that put up walls that tear at your strength….

Kinda like the song, you know “I’m tired of hoping we can work it out.” And boy would it be easy if those one or two people were the same ones, they never are.  You gotta start all over from ground zero, pleading your case.

Part of the Gospel today struck me like a lightening bolt, “I am too weak to dig and ashamed to beg.”  I heard it and it finally all kinda made sense to me.

Tony and I are going to have weak days caring for Owen.

We will always face the monsters that just can’t join our fight to kill this beast.

And it is ok to realize that yes at times, we are just too weak to dig.

But that is why God gave us you, so we don’t have to keep digging and we don’t have to Beg…. So simply that with you and God in our corner we will not give a hour or a second or another minute longer.....

We are busy getting stronger……

Love you all and grateful hearts

Xoxoxx

The Dumms

PS Thank you for the love, support, chocolate and cards on my recent ‘weakest days’ you all ROCK MY WORLD!!!



9.22.13

“Run, Owen, Run”

I heard Wade exclaim this today as they were playing some kind of traffic cop vs. motorist as Rutger (cop of course) was trying to pull Owen over for speeding (in his wheelchair). 

Wade, “Run, Owen, Run”

It was a priceless holler to a kid that was doing his best to out ‘run’ the law with a joystick.  

And yes, the Law won, as it should.  But he still got to have the feeling of running.

I think that was what the Picnic was all about, right?  That feeling of running, the wind in our hair, the miles behind our feet and the crowd cheering us on.  Yes, we ran on July 27 and this time the law did not win, Owen did.  We raised well over $30,000, another record year for us to outrun Duchenne and derail it.

We have our board meeting 8.24 (check out our amazing board will you?) to decide how exactly we will derail this beast and you know we will… with “Run, Owen, Run” in the background.

Thank you from the very depths of our soul.  You keep us up, you keep us positive and you keep us believing that we will prevail.  God Bless you all!!!

And now to “Ride, Owen, Ride”
Our inaugural Cycle in September Iron Horse Ride is 9.15.13.  We look forward to a beautiful Sunday morning / afternoon to celebrate cyclists of all speeds and skill hitting the Cleveland Metroparks for our attempt to derail Duchenne one peddle at a time.

This historic event cannot happen with you.  Click the poster to print and share

We need cyclist first off and then we need partiers!  The rides kick off on various times in the morning with the goal of all meeting by 1pm at Wallace Lake for a Great Big Party (this is where you non-cyclist come in).  Bring friends and family to celebrate this day, live music from Chuck and Scott, free lunch and great Raffles. 

Please sign up as a cyclist (family friendly too!!) on our Event Page Cycle in September or sign up to volunteer or sign up to just come for lunch (yep we need a count so we don’t run out of food).

Help make this a success

“Hope, Owen, Hope”

So this is the hard part of this update.

  ........ Hope ........

 ......... FDA .........

 ..........   New Drug Approval ........................

So many of you bled your pens dry writing letters for us to the FDA regarding Eteplirsen and accelerated approval this year.

We have been a bit silent on this since the news came out a few weeks back mainly because we just don’t know how to take it.

The Great News is the FDA heard you, heard us and heard our amazing mom’s (Jenn McNary and Christine McSherry) that worked their tails off to be heard.

We (JOA) has not been given a clear answer, but it seems that accelerated approval will not happen.

However, the FDA gave the nod to Sarepta (the makers of the drug) to apply for a NDA or New Drug Approval in the ‘first quarter’ of 2014.

As Pat Furlong, President of our beloved PPMD, stated this about the filing for NDA

“Today is a landmark day for the entire Duchenne community. Not too long ago, the Duchenne therapy landscape was a barren field with little to no life. Thanks to a commitment to our patients and the field by the U.S. government, international governments, the venture community and industry, this landscape has changed markedly to the point where today we have the announcement for a planned first-ever filing of an NDA for Duchenne.”

As I told Pat, I feel much like Veruca Salt from Willie Wonka.  “I want it now!” 

Shameful, I know in that Tony and I are so very lucky to have Owen today where so many Duchenne parents, heck even non duchenne parents (yep there are so many fatal childhood illnesses that do not get any attention) do not have their son. 


But 2014 is not today

And if it is not today, that means it is not helping Owen’s rapidly decreasing muscle world to STOP decreasing.

So thank you – you were heard, we were heard – and not to belittle all the amazing work done.  To me as the mom that has to watch JO’s fears climb daily,

“I want it now.”

Yes, it is selfish.  But perhaps that is what I need to be to continue this quest to derail this murderer. 

Hope, Owen, Hope and with that we will also Pray.

Come out on 9.15 ~ bike with us, celebrate with us.  Take in a beautiful fall day in Northeast Ohio.  Take on a little of that “I want it now” attitude and spread that to your kids that instead of watching video games and football games that day, you will spend some family time with us enjoying what God gives us.

Run, Owen, Run….

Love you, Owen, Love

God bless you all

Xoxoxoxo

The Dumms

PS ~ Watch the progress of our Marathon Mom’s Elsa Kilbane and Brandi Rucinski as they prepare for their Marathons for John Owen….   Also look for a Dinner Date Night for these great runners… where a portion of your dinner bill will go to their efforts … YEE HAW