So… on to the Wish! 
October of last year, Owen decided on his Make a Wish.  With the help of his amazing pediatrician, Dr. Falconi from Cleveland Clinic Children’s, he wished for a Tree house.
 
This isn’t any treehouse!  We are so blessed by Make a Wish along with  the design and build team at Payne and Payne Builders is make this a first class home for Owen and his brothers.  Construction started this past week and should wrap up in a few weeks!  We will defienatly have a reveal party!  Check out the video below!
 
http://www.cleveland19.com/clip/12536579/foundation-grants-wish-for-boy-with-muscle-disorder?autostart=true

Between the Picnic preparations and the treehouse we haven’t had much time for anything else, but we are certainly loving the start of summer!  We hope to see you in a few short weeks at German Central on July 9 to #derailduchenne!!!
                           
Happy Father’s Day to all of our amazing Dads!  What a breathtaking day we have here in CLE for them and perhaps to top it off a Cavs win tonight?
 
God bless you and Happy Summer
The Dumms

NERF BATTLE NEW THIS YEAR!

BYO Nerf Dart and safety glasses ~ we supply Dart nerf bullets!  So excited! $5 per half hour to BATTLE!

We are still in need of product donations - please ask all you know to help us make this an amazing event - click here for the request

Please join us on Saturday July 9  from 4 pm to 10:30 and help us derail this horrific muscle killer!  The event is Free to attend and is really as you know all about Celebrating our precious lives!!!  #derailduchenne
 

In that moment we had the once in a life time of walking on to a major league baseball field to soak in our glimpse.

We’ve had a lot of these amazing views this year. Owen being part of the trial, the Gala, being the 2016 Courage Award Recipient, the Make a Wish Tree House planning….

And Today… amazing day ….. .The last day of school!! Trip to the Zoo with our besties…. The clear start of summer…. Meeting a ton of the Tribe Guys who so graciously signed ball after ball and talked to our kiddos right before their game… and of course the amazing win tonight as Mike Napoli’s hit got Frankie home for the win… hearing the crowd roar and seeing all the boys screaming and cheering…..

A glimpse

So many that keep building on each other helping to push out the dense fog of Duchenne. Though still lurking and though still silently stealing, we have just been lucky enough to ignore it for a little while.

Long enough to make memories

Long enough to look back at the glimpse and forever keep it within our soul, right on the surface so we can easily pull it up when needed.

Thank you for being part of our glimpse today and every day.

Thank you Mike Napoli for sharing your glimpse with our family….
Do me a favor, tomorrow, make sure You go get your glimpse on …..
~~~~~

We look forward to seeing you this summer!  Please come out and support our Picnic in the Park on 7.9.16
 
 

Hang on to your hats, because this is going to be long winded…..
 
It’s been a while since we have given a long update, so I trust you will forgive us and hope that you take the time to read through each of these very important, some exciting, some nerve wrenching, some just insane, issues we are tackling in the first months of 2016.

Picnic in the Park 7.9.2016
 
Mark you calendars and be sure to join us on our epic annual fundraiser.  This is our biggest effort to raise dollars for research and your constant support these past nine years has proven our JOA supporters

BRING IT every year!
 
We are gearing up for our ninth annual Picnic in the Park on July 9 at German Central.  We can’t wait for the amazing evening in this beautiful park all to simply celebrate life and family ~ We are in need of product donation for the big day, please see our pledge form here and feel free to contact jen@joainc.org for any donation ~ big or small we need them to derail!

i~YOUR SAMPLE LETTER
 
Dear Ms. Moon Hee V. Choi
          The following is my written testimony submission for the FDA Advisory Committee Meeting to consider Eteplirsen – April 25, 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
 

FOR IMMEDIATE RELEASE              CONTACT:  Jen Dumm  (440) 570-2167
                                                                                                                   Jodi Nichols    (740) 502-6519
Two Ohio mom’s quest to change the world for their fatally ill sons
 
Jodi Nichols, Newark, Ohio and Jen Dumm, North Royalton, Ohio will testify at the Open Public Hearing at FDA Headquarters on January 22, 2016.  Both their sons, Andrew Nichols (9) and John Owen Dumm (12) are part of a 2 year drug trial at Nationwide Children’s Hospital in Columbus, Ohio.  The drug, Eteplirsen, has changed the course of the fatal illness the two boys share, Duchenne Muscular Dystrophy.  The mothers will join over 300 Duchenne families, all present to urge the FDA to say Yes to Eteplirsen.

Duchenne is a genetic muscle disease, which since birth, has deteriorated every muscle in these boys, to the point of wheelchair dependence and 24/7 care.  Once active, seemingly normal boys, Duchenne over time has robbed the simple things like, walking, brushing teeth and independence.  Duchenne is a brutal muscle killer that until Eteplirsen, would not be slowed or stopped.

Both boys are gaining strength while on this experimental drug.  Both are able to move arm, leg and trunk muscles that had been lost, which both mothers thought was permanent.  “Eteplirsen has dramatically slowed the course of this fatal illness in John Owen, he has strength in every muscle that we thought was gone for good.” Says Jen Dumm.

 The FDA is under fire by the rare disease community for recently denying the New Drug Application of Bio Marin’s drug, Kyndrisa, a similar drug as Eteplirsen.  This despite the urging of Congress to fast track such drugs through the FDA via the Food and Drug Safety and Innovation Act (FDASIA) passed in 2012.  

Eteplirsen is safe, both boys have shown zero negative side effects and the list of new found skills they can perform is endless.
 
These mothers beg for your support as they journey to Washington, DC on Friday 1/22/2016 to urge the FDA to pass this life changing drug produced by US Biotech Company, Sarepta Therapeutics.  Contact your congressman (click for House and click for Senate) and urge them to sign the Congressional Letter circulating on Capitol Hill in support of Duchenne Families.  Congress has given the FDA authority to approve drugs, such as Eteplirsen based on safety of the drug. 
 
“What would you do if your child was diagnosed with a killer of a disease and a treatment was within your reach, but it was up to the FDA to determine your child’s fate?”  Asks, Jodi Nichols.  “Please join Jen and I as we fight for our boys and urge your congressman to sign this letter encouraging the FDA to end our fight and the fight of many mothers across the country.”
 
About Duchenne:  Duchenne Muscular Dystrophy is 100% fatal and typically only affects boys.  A very tiny part of the boy’s X chromosome was deleted.  This deletion makes it impossible for him to build muscles because the message ‘build dystrophin’ never gets to his brain.  Eventually, all of the muscles in his body will breakdown making it impossible to walk, eat and breathe.  Soon after that his little heart muscles will breakdown as well and we will be forced to say goodbye to him well before he has fully enjoyed his 20’s. One in 3,500 boys has Duchenne Muscular Dystrophy.  Until Eteliprsen, there has been no effective treatment for Duchenne.
 
About Sarepta Therapeutics: Sarepta Therapeutics is a biopharmaceutical company focused on the discovery and development of unique RNA-targeted therapeutics for the treatment of rare, infectious and other diseases. The Company is primarily focused on rapidly advancing the development of its potentially disease-modifying Duchenne muscular dystrophy (DMD) drug candidates, including its lead DMD product candidate, eteplirsen, designed to skip exon 51. Sarepta is also developing therapeutics for the treatment infectious diseases, such as drug-resistant bacteria and other rare human diseases. For more information, please visit us at www.sarepta.com.
 
####

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.

--------------------------------------------------------------------------------------------------------------------------------------------------------------------
~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
-------------------------------------------------------------------------------------------------------------------------------------------------------------

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: PCNS@fda.hhs.gov
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
--------------------------------------------------------------------------------------------------------------------------------------
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
--------------------------------------------------------------------------------------------------------------------------------------------------------------------
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 braedansbridge@live.com
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 colovasj@gmail.com
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.