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

PICNIC IN THE PARK 7.27.13

It is hard to believe we are just one week away from our biggest Duchenne derailing event this year ~ our Picnic in the Park!  We have close to $30,000 in product donations to give away!  We are so excited for again we have awesome entertainment, food and fellowship including; Jabez, The Polka Pirates, The Cleveland Breakfast Club, Hole in One, Dunk Tank, JUNGLE TERRY, LASER TAG, PIN BALL, Famous Dave’s, Tommy’s Pizza and Dairy Queen.

Please join us on Saturday July 27 from 4 pm to 10:30 and help us derail this horrific muscle killer!  The event is Free and is really as you know all about Celebrating our precious life!!! 

Click here to view the many many raffles!  Make a point to be with us!

Thank you also to our many volunteers that always make this night a huge success!

Owen ~July Voice of PPMD

We were so excited that Owen was selected as the July Voice for PPMD.  He conducted a very cute interview with Will Nolan.  Please check him out at this link and share the great work that Parent Project is doing for our boys!

FDA
Special thanks to our friend Rachel Manias who literally was pounding the pavement in DC yesterday trying to encourage Senator Brown and Senator Portman to sign the FDA letter urging the FDA to move expeditiously with respect to a request for the approval of the accelerated marketing application for eteplirsen.   PPMD, Jett Foundation and our friend Jenn McNary have been working tirelessly to push our government to approve this potential life saving drug….. and  still no word, but we are trying.

Jett Ride!

We had a blast this Wednesday with the 2013 Jett Riders!  We had tons of fun in the pool, slip and slide and with our family.  They set off Thursday morning for Massilon and will make their way to Point Pleasant NJ on their cycles by August 3!  Safe travels and God bless you all!

“You hold him close so you'll never forget how his heartbeat feels
No, you never will”

Monday night, I fell asleep to the sound of a cherished heartbeat.  You see, after an hour or so of tucking Owen into bed, he was still awake.  He called to me with his shirt up, hand on his chest and tears in his eyes.

I immediately knew he was covering his heart.  He said, “mom, this hurts, don’t touch it.”  I asked him if I could have a listen to his heart, I did and it was racing.

I looked up and saw that he was crying (not really realizing it when I first came in).  I asked him if he was in pain, he said no it just felt weird. I asked him why he was crying, he broke down.

And shook his head

I grabbed his hand and asked kissing it, “Please tell me, honey, you can tell me anything.”

After a few thoughts whirling in his head and a wipe of a tear, he said, “I’m scared.”

It was a calm night, in fact the perfect summer night, no rain, no thunderstorm to fear, no scary movie just watched no homework in sight, (what could he possibly be scared of at this hour?)

“Oh, honey, what are you scared of?”

He said, “You know, my legs, now my arms” then he looked down toward his hand on his chest and I knew then he was afraid for his precious little heart.

(Sinking feeling inside of me…. How to respond?)

I asked him to remember what Dr. Arruda said about his heart at his last visit, he said, “She said it is perfect.”

I told him that she was right and had him repeat that Dr. Carl said his lungs were in great shape.

Few more deep, deep tears, “but I’m scared, mom.”

He gave me a monster hug and I told him that it was ok to be scared, but he does not need to be scared all by himself.  I told him we are always by his side and that we love him so much.

After a great long hug, I went to get Tony and we decided he needed to sleep in our bed. 

I think we are all pretty much scared, running scared in truth, and really needed each other close to just soak in the present and the love that we hold so deep for each other.

Of course, once settled in Tony and Owen engaged in Princess banter and called each other Princess Leah then went through the manly mental toughness they share.  Though I watched as Tony fell asleep soundly surrounding himself with Owen.

As I settled in, he threw his arms around me and snuggled me down so my head was on his heart.  I would not move an inch, nor did I for a very long time as I listened to the heartbeat that I hope to never forget exactly how it feels. 

No, I never will.

………..

Please join us 7.27.13 and help Owen not be scared anymore…..

God bless you

The Dumms

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!

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!

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

We plan to put baskets together on 7/5, 7/6 and 7/7 ~ and we need help.  Please email me at jen@joain.org 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

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.

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.

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!  

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.

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. 

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

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!

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

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.

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 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