Dear Friends!  Happy New Year!  This update finds us in an urgent state of need.  As indicated in our last update, the FDA meeting is coming! 

Your action is needed BEFORE  this  THURSDAY - JAN 7 2016 - to send this message to the FDA regarding Eteplirsen!
 
NOW IS THE TIME!  Please stay with me on this long update and read it to the end – then ACT – WE MUST HAVE YOUR ACTION THIS WEEK…. It is Critical!

On January 22, 2016 the FDA will hold an open hearing on this drug.  This is our opportunity as our JOA community to have the FDA hear our voice and record our plea to approve this safe and effective drug…….

Are you in???  If so – Keep Reading then ACT!

We have seen amazing improvements in Owen since he started this medicine on April 10, 2015.  Some of you have seen firsthand these improvements.  Your witness to his new abilities & STRENGTH is what you need to write the FDA about!  For those that have not seen Owen of late, you have witnessed through these updates all the amazing tasks he is doing as he gains strength right before our eyes!

At the end of this message is a template for you to use to write your letter to the FDA or you can choose your own words to write to the FDA. 

But first read our letter – simply this drug is working in ways no one thought possible.

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~TONY & JEN DUMM LETTER TO THE FDA
Dear Ms. Moon Hee V. Choi
The following is our written testimony submission for the FDA Advisory Committee Meeting to consider Eteplirsen - January 22, 2016.  Our son, John Owen Dumm, (12) started the Sarepta 204 Eteplirsen study on 4.10.15.  He was diagnosed at age four (4) and since then we watched every muscle in his body weaken.  He stopped walking at age eight (8) and early 2015 his arm strength was diminishing quickly.  The following are things he no longer was able to do prior to 4.10.15:
          -He was no longer able to sit up straight
          -He was no longer able to bring his fork to his mouth
          -He was no longer able to scratch his ankle and sit back up again
          -He was no longer able to lift his arm to his face
          -He was no longer able to control his torso
          -He was no longer able to control his legs in any type of position
          -He was no longer able to wiggle his legs
          -He was no longer able to stand with his KAFO’s for more than one hour
          -He was no longer able to reach across the table to grab his napkin
          -He was no longer able to pick up his plate to clear it from the table.
          -He was no longer able to gather his own books at school from his desk
 
Duchenne has robbed our son of daily life functions.  It also dampened his spirits and diminished our hope for at the very least some type of quality of life.  Every day is a battle to move, dress, eat, function and thrive.  Duchenne is a muscle killer, it shows no mercy and stops for no one.
 
Today, 1.2.16, the battle though still with us, the burden has been eased through the weekly infusions he receives of Eteplirsen.  We have experienced ZERO Negative side effects in the 39 weeks he has received this drug.  This drug is SAFE.  There has been absolutely no medical issues or cause for any concern while on this drug.
 
We have, however, witnessed strength in all aspects of his body.  Strength we never thought we would ever see.  When John Owen was diagnosed the doctor said, if a drug becomes available in his life time, it will sustain him at whatever state he was at once receiving the drug.  That doctor was naive to the fact of what Eteplirsen is able to do.
 
On Eteplirsen John Owen has gained on his abilities, not just sustained them.  Since 4.10.15 we have witnessed the following changes in John Owen Dumm:
-Today he can reach down and scratch his ankle and sit back up
-Today he can stand in his KAFO’s for two to three hours without fatigue
-Today he can  reach across the table to steal his dad’s food to play a prank on him
-Today he can  clear his own plate from the table, take it to the counter and set it on the counter
-Today he can  lift a box of Kleenex from his foot rests to his desk
-Today he can  get his books out of his desk while balancing on his yoga ball
-Today he can  keep his legs in an upright position while lying on his back
-Today he can  control his hip flexors so his legs don’t flop open like butterflies
-Today he can  reach up and scratch his face
-Today he can  sit up straight and tall
-Today he can  take his fork to his mouth to eat and not his mouth to his food
-Today he can  peddle his therapy bike on his own for short bursts
-Today he can  reach his hand to his ear and clean out his ear all by himself
-Today he can  draw, color, write without fatigue
-Today he can  he can wiggle his legs as a sign of discomfort while at the dentist
-Today he can  show confidence in using his muscles – he attempts to do things for himself
-Today he can  witness his LVEF % INCREASE instead of Decline
-Today he can  hope for a future that is bright, not cut short at age 19 because his heart is healthy, his lungs are strong and his muscles are GAINING STRENGTH right before his eyes.
 
We urge you and your team to approve the NDA for Eteplirsen as soon as possible.  Everyday Duchenne boys that can benefit from 51 and are not receiving this drug are simply dying.  Eteplirsen is safe, this drug has reversed the course of this muscle killer in John Owen Dumm, and it can and will do the same for every child that can use this drug.

In addition, by approving this drug, you will change the future for not just our boys but for all affected by muscle disease.  Exon skipping is a game changer, this safe and effective drug will change the path of this killer as we know it and will open the doors to many therapies that can and will improve the lives of our citizens.
 
We appreciate your dedication to this process and urge you to approve the NDA for Eteplirsen so John Owen Dumm can continue to build strength.  Now is the Time!
 
Tony & Jen Dumm
5715 Bunker Road
North Royalton, Ohio 44133
John Owen Dumm’s Parents and founders of John Owen’s Adventure, Inc
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You can feel free to write from your heart about why it is so critical for the FDA to allow this New Drug Application (NDA) to pass.  Many more boys can benefit immediately if this drug is approved and your written statement can be the one that derails the path of Duchenne in our boys!

We thank you in advance for your willingness to submit this urgent statement – please send this on to everyone you know, in every form of media (email, social, text, heck pick up the phone and call!)  and ask them, on behalf of John Owen Dumm and John Owen’s Adventure, Inc, to submit their plea. 

IT IS CRITICAL THAT YOU SEND USE THIS EMAIL TO, USE THIS SUBJECT LINE AND THE FIRST LINE AS INDICATED HERE:  Must be submitted by THURSDAY 1.7!!

Send your email to: [email protected]
Email subject line: Written testimony submission for FDA Advisory Committee Meeting to consider Eteplirsen - January 22, 2016
Attn: Moon Hee V. Choi
‘The following is my written testimony submission for the FDA Advisory Committee Meeting to consider Eteplirsen - January 22, 2016.”
 
Here is a sample of what to write OR you can write in your own words (as long as the above is included)
 
~YOUR SAMPLE LETTER
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Dear Ms. Moon Hee V. Choe
          The following is my written testimony submission for the FDA Advisory Committee Meeting to consider Eteplirsen - January 22, 2016.  I am writing on behalf of John ‘Owen’ Dumm (12) who has Duchenne Muscular Dystrophy and his foundation, John Owen’s Adventure, Inc.  Owen started the Sarepta Trial 204 on 4.10.15.  He has experienced zero negative side effects from being on this drug.
 
I have memories of Owen before this muscle killer robbed his legs from walking and before this killer took full hold of the rest of his muscles.  I remember him XXXXXXXX  {HERE IS WHERE YOU CAN ADD YOUR EXPERIENCES – for instance, walking in the halls at school, playing in the creek with his brothers, playing the games at his annual fundraiser, JOA Picnic in the Park}.  Duchenne has brutally taken away these abilities in Owen.  I thought that once these muscles were gone, they would be gone forever.
 
This, however, all changed when Owen started this trial.  From all reports he has had ZERO negative side effects.  {IF YOU HAVE PERSONAL EXPERIENCE LIST OUT ALL YOU HAVE SEEN HERE….} I have witnessed the muscles that were weak, get stronger when Owen XXX XXXX    {EXAMPLES – LIFTED HIS FORK TO HIS MOUTH – MOVED HIS BOOKS ON HIS DESK  - SAT UP STRAIGHT IN HIS  WHEEL CHAIR – BENT DOWN AND SCRATCHED HIS LEG….}
 
This drug is working in Owen.  Eteplirsen has proven to be safe in him and in other boys.  I urge you to consider the safety and effectiveness of this drug and insist on the approval of the NDA before one more day goes by and yet we lose one more boy to this muscle killer.
 
Exon Skipping is a game changer for our Duchenne boys.  It is clear from the abilities shown in our Owen that this therapy works.  It will work for all boys that can benefit and approval of this drug will open the doors to cure not just these boys, but all that will benefit from Exon Skipping, in this generation and the next.
 
I fully understand it is your duty to complete this due process.  It is also your duty to supply our citizens with drugs that are safe and effective.  Eteplirsen is both and therefore it is your duty to approve this drug immediately, Now is the Time!
 
I thank you for your consideration.
 
XXXX NAME
XXXX ADDRESS
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Thank you again so very much for your ACTION!  Please share this with your family, friends, workmates – all you know – we need to get this word to the FDA – This is our country – Our Choice – this Drug WORKS!!! God bless you, Happy New Year and GODSPEED ETEPLIRSEN
 
Tony, Jen, Rutger, Owen and Wade!!! xoxoxoxxo

WITNESS HIS STRENGTH!  NOW IS THE TIME!

He is gaining strength.  Every week we have the honor of going to Columbus to receive the infusion of the trial drug, Eteplirsen.  Every week, he gets just a little bit stronger.  Not just on the outside, but the inside… his LVEF raised 7% from the start of the trial to the 12 week marker, in a few weeks we will the 24 week marker, and I know his heart, as well, as all his muscles will continue to be a little bit stronger.

Strength is never a word I thought I would say with Owen.  Sure his spirit is strong, his faith is strong, his love is strong, our family and community – yep strong.  But Owen, Strong?  With Duchenne, never!  Well now is the time for me to never say never again.  We see strength in Owen.  Right before our eyes, this is working, this drug is doing what it was intended to do.  Build Strength. 

God has provided an amazing opportunity to show His Strength through Owen and not just in this drug but in Owen’s life and all that He has done to share this life with You.  It is amazing that this is something right in front of our eyes that we touch, we feel and scientifically quantify with Strength.  To date there are no side effects to Owen, other than having to wake up really early and live stream to his classroom on the way home.

He will kill me for telling you this, but I thought it odd when I tucked him in Monday night, he wanted to keep hugging me and kept kissing my cheek.  Something Owen does not do often, to even me.  I went to bed realizing that his heart was full from the day’s events and that though he would NEVER tell Merri-Jo, or Aunt Sue or Mrs. Basch or anyone that would ask – He was proud of himself because for the first time in forever, he had it, Strength.  I thought to myself as I fell asleep,  that even if we can’t get this drug approved, even if the FDA pulls the rug out from this effort – I am grateful for the Strength that I witnessed in him, if just one day, it was there and it was all his.

I am not saying that the FDA is going to pull the rug, but they have done it before.  We wrote letters and letters 3 years ago, remember? .... begging them to not pull the rug.  I will tell you, Now is the Time, especially since the FDA just filed the NDA (New Drug Application) for Eteplirsen.  We are approaching an important meeting in November with the FDA and several drug companies on exon skipping.   Owen will NEED your strength at this meeting.  We will kick off a letter writing campaign when the timing is right and when we ask – you will need to drop everything and get as many of your friends and family on board to tell the FDA….NOW IS THE TIME.

The same day I write this to you, I read, as can you, on Facebook the horror and sadness of so many moms and dads as their boys continue to struggle, continue to decline, continue to lose strength.  One mom shared that her adult son said ‘no’ to a trach even though his lung muscles are failing.  Though we see strength in Owen, he is only one of 32 boys lucky enough to receive this drug.

Every day around us, our boys are failing.  Now is the Time.  We simply cannot wait any longer.  Strength for one MUST mean Strength for ALL.  We have to continue to raise awareness and funds to derail duchenne.

We've got an easy way to help Derail!

Come out, will you? On September 20 and see the strength first hand at our Iron Horse Bike Ride  ~ Cycle in September.  We will meet at Middleburg Hts Municipal Center 15700 Bagley Road Middleburg Heights, Ohio 44130 at various times for our great Sunday cycle.  Lunch at noon and amazing music by Natalie Kulka.  Visit our events page here to learn about all the rides from a fun ride to an intense 72 miler.  Now is the Time to get on board with JOA and strengthen your resolve to derail this beast called Duchenne.  It does not stop and neither will we.  Help us let other moms and dads never say never again!

Don’t stop after 9.20.15 ~ Get your game on by joining us in Toldeo, OH with Braeden’s Bridge  An awesome reverse raffle it is such a great time!
  “All in for Duchenne”  10.3.15
Dinner / Reverse Raffle to Benefit
Duchenne Muscular Dystrophy
When: Saturday, October 3, 2015, 6pm - 11pm
Location: Sylvania Tam-O-Shanter
Raffle Tickets includes the following: No Tickets available at the door

• Admission to the event $100 per couple
• Dinner by "Jeds Barbeque and Brew" 
• TShirt from Braedans Bridge (based on availability)
• Drinks for the Night (Soda, Beer & Wine)
• Chance to win $4,000, $1,000 & $500.00 in the Reverse Raffle

100% of Proceeds go toward  Duchenne Muscular Dystrophy Research

For more Information, Tammy Henegar at [email protected]
www.braedansbridge.squarespace.com
Checks payable to Braedan’s Bridge Inc.

Talk about Strength… Check these Cleveland Barons Tier 1 Elite U15 Hockey team in Cleveland, Ohio!  They have adopted John Owen as they kicked off their season by giving back to the community, specifically to Duchenne by doing the DMD Push up Challenge.  This is an amazing group of kids and this effort lead by hocky momma Renee Martinez.  Please keep checking out this challenge, heck join up and show us your Strength in Push Ups!!!!

Need a Night Out?  How does live music and Blue Canyon apps sound for just $10?  On 9.10.15 Join Tony and I as we support our dear friend Joe Vasil as Celebrity Bar Tenders for his Mission Service Swing into Action. We are excited for a great night out and to support this amazing cause - please tip us greatly and we kindly ask that you RSVP so that  we may prepare for the evening [email protected]
WHEN: THURS., SEPT. 10TH 
FROM 6 -9 PM
WHERE: BLUE CANYON 
RESTAURANT PATIO 
WHY: SUPPORT A NEW ADULT LITERACY PROGRAM in El Salvador

I don’t want to end this update without a quick family summary…. We simply are awesome!  Loving life, getting back into the swing of school.  We can’t believe this is Rutger’s last year at St. Albert the Great!  He will have an awesome eight grade year.  Owen is in sixth grade and loves his teachers and classmates and Wade is rocking third with his bff Joey again in his class.  We are so proud of my Godbaby, Megan Kruze, who has started her first year at OSU as a Biomedical Science Major and her goal is to derail duchenne…. Like I said, Now is the time, so get on board and derail.

I’m writing to you as I listen to the hum of the tractor, working busily around our yard, cutting down trees, moving mulch, cutting grass, yes for the Dumms that is the sure sound of summer, the steady hum of the New Holland.  Instead of Tony on the helm, more often it is Rutger, yet another sign, one that makes me happy but sad all together, it means Rutger is becoming a man as he takes on more and more responsibility of keeping up our yard.

I can’t believe it is summer and I can’t believe it has been since January that I have sent an update.  Must be the sign of the times as we are so fortunate to have embraced a very busy time in our lives.  As of April 10, Owen and I go to Columbus every Friday morning for him to participate in the trial of a ‘lifetime.’  Adding this trip to our weekly schedule has taken much time out of our normal routine, hence I have not even thought of sending an update until now. 

In addition to the awesome trial, we celebrated Wade this Spring as he received his First Holy Communion.  We simply can’t believe that our baby is now 8 and growing up so quick.

We are kicking off summer!  The first week off from school was great!  The boys fell quickly into the routine with their fav sitter, David Basch two days a week and Mun Mun and Opa on Thursdays.  We don’t have much planned for the summer, just creek time, pool time and boy time.  Oh and of course, Picnic in the Park time!

This week we plan to put the basket raffles together for the Picnic.  So many of your generous hearts have given product donations in the past.  If you would like to contribute again this year, please email me at [email protected] so we can include your gift this year!

We are all set with an awesome line up of food, entertainment and great raffle prizes.  Please share this poster with your friends, families, co-workers and friends.  You know it is always a great summer night and the more folks that can celebrate with us, the more successful we are in spreading the word to derail duchenne!

Many of you know from Facebook and our last update that Owen has a lifelong companion now, Larry P Puppy is what we call him, a long haired Daschund that we are training as his service dog.  He’s been on every trip to Columbus and is doing an amazing job as his faithful helper!  We visited the Columbus zoo last week and he was amazing!  The best part by far is just watching the love and interaction that they have together, they truly are a match come straight from Heaven!

Though we can’t tell you much about the trail Owen is in, we can tell you we see strength.  A little bit stronger, every day, just a little bit stronger.  We hope you will join us this year at the Picnic on July 11 to witness this strength yourself as we continue to be joyfully celebrating the amazing life we have been blessed with and you, our friends that share it!  We are so blessed by this amazing community and grateful for the constant love and support! 

We hope to see you soon,

The Dumms

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