John Owen's Adventure, Inc.

10th Picnic in the Park 7.8.17

6/4/2017

Yeah Baby ... Yeah Picnic in the Park ... Baby

It is so hard to believe we have been fighting this beast for 10 years. How I wish I had a different anniversary to share, like 10 years Free of Duchenne, but Dang It All,

I hate Duchenne.

I know we are fighting the good fight, but at times, you know, it just stinks…..

Enough already, so ready to #derailduchenne…………

You keep us going, the constant support, generous spirit and always present prayer gives us HOPE that maybe one day – we can say “Hey … Wow!!!! It’s our 10th Anniversary Free of Duchenne.”

We can make that happen, you can make that happen. Keep this going and keep the giving coming!

Invite your Friends, Family, Co-Workers to our Picnic in the Park on 7.8.17 – you die hards out there know this is an incredible Family centered AFFORDABLE event….

Please share our pledge card and flier – we need more product donations for our raffles and would LOVE to knock the socks off attendance this year~

We have great new events
                   Bingo
                   Side Boards
                   Wine Pull
Coupled with our tried and true great kid’s games, raffles, GERMAN BEER, amazing FOOD (all about the food) and Victory Highway to keep you dancing! The handcrafted raffle items are amazing again this year as well, the basket raffles are shaping up to be STELLAR!!! Disney tickets, Airline Tickets, Tv, Furniture, Artwork, gift cards…. Oh so excited!

A GIANT Thank you to our beautiful Grandma Barb Muniak for her relentless work in soliciting so many amazing raffle items!!! Love love you!!

Oh goodness and do you know our Volunteers? The MOST dedicated in Northeast OHIO!! Sign up guys for your station as we so treasure your service and we so need you on 7.8.17!!

http://www.joainc.org/volunteer-opportunities.html

For those that need a checklist to keep you motivated and focused…. Here you GO Baby! Derail sweet thing!!! Derail…….

So for the rest of our life…..
It has been an insane year with Owen’s surgery in September and his recovery. Thanking God that we are still in the Eteplirsen Study so he continues to gain strength as he continues to still recover from spine surgery.

Loving on the Sunshine and that the Boys will be off school in a few days! Rutger flew through his first year of High School and despite our urging to stop – he keeps growing! Wade is doing swimmingly in school as well and all three are just ready to do nothing but Chill, enjoy the treehouse, Larry and life.

Happy Father’s Day to all of our amazing Dads! And please, keep doing what you do best, pray for our Duchenne boys and support our biggest event of the year!!

God bless you and Happy Summer
The Dumms

Survivor

1/30/2017

Survivor
A word I’ve never considered to be part of our Duchenne world.

Joyfully, we all know and embraced a survivor. Whether from a brutal illness or a strong warrior finally coming home.

The St. Jude Commercials (love) tears me up that 1 of 5 children with cancer will not survive.

In the Duchenne world, 5 of 5 children with Duchenne will not survive. Since our diagnosis, day one, has never been about survival.

This year we had the honor of raising gobs of money for Duchenne Research through our various events, our biggest event, the Picnic in the Park. Our spot on Board of Directors approved the disbursements of these funds to PPMD to fund CRISPR(Cas9). This research is more than medicine, it is technology.

Gene Technology

I finally found an hour to listen, really listen to this webinar hosted by PPMD in December.

Listening to Dr. Olsen, it was difficult not to weep. As always, these education pieces relive our journey – from day one diagnosis to the future plans Duchenne has for Owen and his sweet young body. It is always painful to listen to our Duchenne reality.

Though my tears turned quickly into tears of joy listening as Dr. Olson said these words that made my heart stop beating for a split second……this technology is the opportunity to ‘end this disease in its tracks.’

That’s right

End Duchenne

I let this technology soak in throughout the day and as I drove home that night, I heard in my head, over and over…….

Survivor…..

Praise God that perhaps in Owen’s lifetime and all our current and future generations, we can know and embrace a Duchenne Survivor.

Please listen to this webinar, this technology, this HOPE - Please listen by clicking here
Please support our efforts in 2017, we have several family friendly events to help us constantly fund the path to finally derail Duchenne.

Please read the PPMD News release from today, helping us all understand this amazing pathway to surviving duchenne.

Thank you and God Bless You
Tony & Jen Dumm
1.30.17

Mile per mile... we got this

10/5/2016

Last 2016 JOA Event, Catch our Spirit!

So excited that we can celebrate this awesome year with our last event, our Moving Spirit 2016 Team Half Marathon and Marathon. We get to celebrate the approval of Eteplirsen by the FDA in the very city Eteplirsen was first dosed in the original 12 boys, Columbus, Ohio at Children’s Nationwide in the very race sponsored by Children’s Nationwide!

Kathy Warner, Diane Eichman, Peg Sonday and James Harrison will rock out the Full Marathon on 10.16.16! Deb & Ronan Factora, Jack Reardon, Julie Reardon, Sally Kapcar, Christie Kinney, Carrie Valdez, Elsa Klibane and I will run the Half!

If you recall this team has run many, many miles for Duchenne. From Fulls to Halfs to 10k and 5k all steps to stop this beast of a muscle killer. On Sunday 10.16.16 we will run 222.70 miles. Please say a strong prayer Sunday morning that we make it through these many miles with safety, courage and joy in our steps.

Consider please donating this week to our team.
$1 per mile = $222.70
$0.50 per mile = $111.35
$0.25 per mile = $55.68
$0.1 per mile $22.27
http://www.joainc.org/contributions.html

Any donation great or small will be so appreciated. We will celebrate every step with the FDA approval. Join us through pocket and prayer to #derailduchenne

Have to leave you with this heartwarming story about
Owen’s Football Team

Gone……

It’s almost an out of body experience to listen to one of your kid’s friends share his thoughts about your son and their friendship.

Of course, like all parents, we want our kids to have friends, be social and create great childhood memories. I never really thought about the impact our kids could have on their friends, I guess I have just been stuck in the ‘so grateful they have friends’ mode to even consider the ‘what our kids could mean to others.’

Last night, I stood in for Owen at the St. Joseph & John / St. Albert 7th grade football meeting. This team is a joint football team between the schools of 12 and 13 year old boys. Half of these players are Owen’s classmates, we have been together since Kindergarten (some even pre-school). We’ve been blessed by these families with their generous support for JOA and even more, their heartfelt love for Owen and our family.

Owen was inducted into this football team last night as the 24th player and each player will wear Owen’s name on their helmet all season. This started from the pure friendship from Owen’s friend John. The day of Owen’s spine surgery, John was really upset at practice and asked his coach and teammates to pray for him. From that, the spirit of Owen on the team came alive. They asked Owen to come last night to receive his team helmet and jersey and talk with the team about Duchenne. Since he was not up for it physically, I gladly took the challenge.

After my short talk about Duchenne and mainly special needs kids, his friend, John gave an amazing testimony about his friendship with Owen. It was one of those times that though I did not record his talk, I will forever replay his very mature, kind and heartfelt words over and over.

John said Owen was one of the best friends he’s ever had. Not many special needs kids have friends, let alone, one’s that call them their ‘best friend’ (tears). He shared the qualities about Owen with his teammates, words that will forever make me proud as a mom, knowing he is a good, kind child to others. Then John shared how he felt the day Owen had surgery….. my heart stopped for a beat hearing these words….

He said, “the day of his surgery I was really scared because Owen wasn’t in school, he was just GONE.” At that point John (and me) got very teary eyed and I felt what he was feeling…. As if to say what if he is “GONE” and not coming back…. (Curse you Duchenne for filling our hearts with fear and worry … Curse you Duchenne for stomping all over our childhood….) Oh this sweet child, in front of his peers, so willing to cry for the fears of his friend and this dreadful beast of a disease.

I just can’t describe how I felt exactly listening to John. But when he was done, most of his teammates were tearing up, and I knew that Owen will always be loved by this group, not just as the 24th player, but as ‘one of the best friends I’ve ever had.’

God Bless you

It's APPROVED! 9.19.16

9/23/2016

You did this, We did this, They did this, He did this!

FDA Approves ETEPLIRSEN 9.19.16!

This is EPIC, as this is the FIRST drug therapy approved to help Duchenne Muscular Dystrophy!

By the Mercy of God and the work of so many fierce warriors, this drug is APPROVED!

It has been a long journey, we’ve been watching this drug since it was in mice back in 2008 when Owen was first diagnosed. This is the drug that one doctor told us would be approved and in Owen by 2010…..This is the drug that you have made possible through this community’s donations to exon skipping in working with PPMD from day one.

We did this! Thank you so much! The battle is won but the war rages on! There is still much to do. This victory is one step for our boys that can benefit from this drug (13% of the Duchenne population) and we must continue to raise funds and awareness so that all drugs that are either in ‘mice or men’ can become approved and quickly. Duchenne waits for no one!

Show us YOUR Strength .....

Show your support this weekend by sending prayer and pocket ($) towards Elsa Kilbane as she runs her 10th Marathon for John Owen! She will run the Akron Marathon Saturday morning, please donated $9.19 (or any combination of $9.19, $19,19, $59.19, $109.19, etc) at JOA. This will highlight our community’s strength in not only recognizing our awesome efforts in supporting this AWESOME, EPIC history making event, but supporting the very spirit that makes JOA amazing.
Donate by clicking here

Thank you for your consideration!! Congratulations to everyone that made this historic event real for Owen and our Duchenne community! God Bless you and Godspeed
The Dumms
xoxox

On a side note, Owen is still receiving weekly infusions of Eteplirsen. He is doing great! We will continue on the trial until it is completed early next year. At that time we will have a better understanding of when/how etc he will continue to receive the drug. Keep on praying that we will continue to make progress, gain strength and fight on!

Owen is doing well after his spine surgery. Physically he is a ROCK STAR, recovering very well! We hope to be back at school in October. Thank you for your prayers and all the support he has received during this time!

View from the Tree House

8/6/2016

I am writing to you from the porch of the tree house…. Yes I said “Porch.”

I so wish everyone could see this view, a buck just strolled by (don’t tell the boys), gentle summer breeze, tree frogs and crickets chirping. It’s been a wind down month since the Picnic in the Park on 7.9.16. We were able to enjoy a week in PA at the family cabin, pool time, swim Tuesdays, bonfires, grilling and yes, the Tree House.

We are still in awe at this majestic structure that Owen wished for and it has come true. Rumor has it that it is over 1,200 square feet. It’s not that big, but certainly bigger than most New York City apartments. It is so humbling the amount of generous spirits there are in the world. If you ever doubt the human spirit, just come sit here and see the view from the Tree House. None of it possible without all the donations of those supporting Make a Wish. We are rounding completion of the interior and hope to showcase it by September. We can’t wait for the boys and their friends to have their first camp out! Come share this view from the tree house, anytime!!!!

Night Golf? 8.27.16

Yes, we said NIGHT golf!!!! Join us please along with the generous hearts of Tom and Becky Hudach as they once again host a golf event just for John Owen’s Adventure! The tenacity of this family to year after year plan, organize and host this entire event is bar none incredible. This year, Night Golf is the theme with glow in the dark golf balls – a sure to be awesome DATE NIGHT! So join us please and sign up by 8.20.16 via this link (http://golf4joa.weebly.com/)

Moving Spirit gone South
We moved our running team to the Nationwide Children’s Columbus Marathon / Half Marathon. As you know, Owen’s trial is hosted at Nationwide Children’s Hospital in Columbus, so why not run in support of this amazing place? It is not too late to join our running (and walking) team. The marathon is 10.16.16 and promises to be FLAT!!! (Yea, no hills!). If you are interested check out the Moving Spirit page or email jen@joainc.org. We will train you – you can do this!!!

Scavenger Hunt
supporting JDRF 8.13.16
So excited for the 17th Annual JDRF Scavenger Hunt on Saturday August 13, 2016, scavenger hunt from 1:00-4:00 PM in Put in Bay!!!! Check it out by clicking here, come join us for an awesome day on the Island for an amazing cause!!!

Night at the Races 9.24.16
Join us for a great night hosted by Mindy and Doug Lee at their Rhizo Kids Fundraiser Rhizo Kids Need a Hero Night at the Races!! I will be running the 7/11 table and need your support for this amazing family. I hope to see you there, click here for more info.

All in for Duchenne 10.15.16

Love to be part of a reverse raffle and amazing date night? Join Braedan’s Bridge, our good friends Tammy and Scott Henegar at the Tam O Shanter center in Sylvania OH for an awesome night! Please click and share these details!

Picnic in the Park 2016
This was an amazing night! The weather was spectacular and the crowd HUGE! We so appreciate all the folks that always make this event happen, the countless volunteer hours and all the support from each one of you to support the event by presence and pocket. Save the date for 2017 as we will be hosting our 10th year – it is impossible to believe we have been on this journey for ten years. July 8, 2017 – don’t go planning any graduation parties, vacations or weddings – plan to be present at JOA 7.8.17!!! We need ideas to help make this EPIC so please share any advice in making our event the show stopper ten year event!

On Base for Duchenne
So grateful for the legs and hits on the Lumberjack 13U 12U and 11U Travel Baseball teams!!! Every single base made this season added up to $$$$ for Duchenne Research! Together the teams raised over $2,700 towards research!

What’s up with the boys?
So Rutger will be heading to High School in a few weeks, we know these four years will disappear and he will be off to college before we know it…. Soak it in … soak it in…..

Wade will be heading into fourth grade at St. Albert the Great…. Trying to prepare for the work load, fourth grade is tough, but he can do it!!!

Owen will be heading into seventh grade at St. Albert the Great. He continues to do amazingly well with the trial, small improvements and sustaining in areas we thought he would certainly not. Sadly, we have ZERO news on the FDA decision to approve Eteplirsen. April feels like years ago, and still mum is the word out of DC on when they will stop screwing around and start changing the lives of all our boys.

We will have a bit of a blip in the school year as Owen will be heading to surgery on 9.1.16 to correct his spine. This is a very common issue with Duchenne and a very common procedure, though major surgery, we do expect him to progress just fine. We do ask though for specific prayers as he endures this procedure and the long recovery road. We will keep you posted, but know that he has this …. Owen is very brave and is ready to fight the good fight, in his own words, “If it’s broke, let’s fix it!”

Thank you again for your unending love and support as we constantly pray to derail Duchenne.

We hope to see you soon
The Dumms

Picnic Tree house and More

6/19/2016

We are so excited to hit the midst of Summer!

It usually means just one thing for us…. Picnic in the Park ! This year is a bit different as we are also in the midst of Owen’s Make a Wish come true!

Please plan to support our Picnic in the Park July 9, 2016! We are still in need of product donations and gift cards to make this certainly an awesome event! Please see our pledge card here and please share our poster for the Picnic (click) with neighbors, friends, family, and coworkers! The second Saturday in July will be an amazing summer night to derail Duchenne!

Don't Forget the NERF BATTLE! Bring your own Dart Nerf Gun!

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

Cleveland 19 News Cleveland, OH

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

. A Glimpse.....

6/3/2016

Calling All Volunteers!
We are actively seeking our loyal JOA Volunteers to sign up for the JOA Picnic in the Park! 7.9.16 any help you can give please sign up here http://www.joainc.org/volunteer-opportunities.html Or email Monica Bibyk at volunteers4joa@yahoo.com

We are so grateful for the 150+ friends that come back year after year to help JOA #derailducehnne!! We need your help!!

This is our biggest Duchenne derailing event of the year ~ our Picnic in the Park at German Central in Parma OH! We have thousands in product donations to give away! 2016 will bring back our awesome entertainment, food from Fire Truck Pizza Co, Mama Mias Foods, Famous Dave's, DQ, and fellowship including; Victory Highway, James Gerard Band, JUNGLE TERRY, LASER TAG, PIN BALL, Hole in One, Dunk Tank, Mama Mia's Sausages and Dairy Queen.

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

FDA Decision

The FDA still has yet to make a decision on Eteplirsen. Decision day was to be 5.26, but instead they offered a delay.

Hurry up and wait.

I’ve got nothing on this. Some say it’s a good sign, some say not so much. I have no idea. All we know is this drug is working in Owen. It is a damn shame that it is not available today for every child it could help. Actually, not a damn shame, actually, I think it is a crime. But we are just one voice, one family, stuck in the rut of government red tape. I better stop here.

On to better news. Brighter News….

MAKE A WISH

Owen’s Make a Wish Tree House should start in the next two weeks. Every day he is asking about it and all the boys are so excited to see this dream come true! They are so excited to share the space with cicadas that are crowding our back yard.
I won’t get into the cicada details, but all I can say is our boys will be able to survive on any protein God provides them.

We had an amazing last day of school yesterday…… here is a glimpse of it….

A glimpse 6.2.16
When Owen was first diagnosed, I thought it impossible that the day would come when Duchenne did not consume my every thought. Early in those days, there were times that all I could do was think Duchenne and somehow managed to fake my way through the fog into reality.

But you know, there has always been a glimpse.

Sometimes I would know I was in it, sometimes, I’d have to actually look back on that memory to realize, it was just in that moment I wasn’t living in Duchenne.

I was just living.

Today was just an amazing day, when we turned the corner from the tunnel at the base of Progressive Field and saw the shadowed images of the boys and their friends as they entered the field, that was my glimpse for today. It took my breath away knowing that in that moment, we did not have Duchenne.

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

This is a long one...

5/16/2016

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.

Rutger with his Godparents, Sue Kruze & Russ Haid

RUTGER .....

So proud of him as he is officially moving on to High School in the Fall. Confirmation, Graduation from St. Albert the Great and getting a job (soon). He constantly is our gift and we are grateful!

Courage
We are so humbled to know and feel that many of you look to Owen as your Hero, as you know, he is our Hero too. Every day we are blessed by the love of our three boys, Rutger, Owen and Wade. On May 7, 2016, Owen was named the 2016 Cleveland Clinic Children’s Courage Award recipient. Check out this amazing video made to honor Owen and our journey Just Click and watch!

We were special guests at the Gala which include first class service to the boys and their friends, endless fancy appetizers, amazing steak dinner, great entertainment and not to mention, at least 42 Shirley Temple’s served to them. Larry was able to attend and of course was the hit of the gala.

Our cities and school as well recognized the great Hero in Owen, St. Albert the Great held a school wide celebration on April 29 and the Mayors of North Royalton and Brunswick declared Owen Dumm days in each of their cities. Owen was selected out of hundreds of children treated at The Cleveland Clinic Children’s hospital. It is so humbling because there are so many Heroes right in our backyard, how we wish each of them could have special recognition that Owen and our family had on May 7.

Camo run Saturday 5.21
Saturday May 21, 2016 we will host our third annual 5k / 10k Run (5K Walk) Camo Run ~ It is amazing to see all the support of our North Royalton Police Department, Carrie Cerino’s, Romano’s Farmers Market and Dr. Bobby Le as we run through the streets of North Royalton supporting JOA and derailing Duchenne!! Look out runners ~ as you go past our house, Owen will most certainly spray you down with the garden hose!

You can register online by Wednesday 5.18 at Noon to take advantage of the awesome goody bag, including a Camo MAGLITE! Registration day of is welcome until 710 am.

Thank you so much to our marathon momma, Elsa Kilbane and she makes sure this race is flawless each year! Elsa just finished her 9th marathon on May 1 (Pitt) to support John Owen and Derail Duchenne.

We are so blessed to have her constant steps and spirit with us and fighting for Owen...xoxxoxo

On base for Duchenne
Take me out to the ball game….. yep once again we are blessed by the amazing LUMBERJACKS and Impact Team Sports as they raise funds for JOA for every base they get on this baseball season!
Interested in getting your team on base for Duchenne?

Contact chris.impactoh@gmail.com

Tree House Make a Wish

We are so excited and blown away at the amazing organization in Make a Wish and the partnership we have created with Payne-Payne Builders, Inc. They are granting Owen his wish, his very own wheelchair accessible tree house. Something he, his friends, his brothers and family will enjoy for years and years to come. So amazing the strength of giving of in Northeast Ohio. We are constantly reminded of the goodness of others in our community.

To learn more about this adventure, check out the Make a Wish site and be sure to make a date this summer to come check out this amazing house!!

Sleep over's encouraged!

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!

Eteplirsen, the FDA, the Committee, the day

April 25, 2016, historic for Duchenne Muscular Dystrophy.

1,000 people met in Hyattsville, MD to discuss the accelerated approval of the drug Owen has been on for 58 weeks, Eteplirsen.

I can’t help but watch and re-watch the amazing videos from this day that our Warrior moms and dads in their amazing nonprofit organizations made with regard 4.25.16.

Over and over, reliving the day – the highs and the major lows. At times, I wanted to literally get up off my chair and go scream at the ‘experts’ on the other side, texting my sister suggesting I might go to jail if the conversation from the FDA continued in the way it was.

During the FDA presentation, Dr. Farkas made comments like boys with duchenne could walk longer if they tried harder....the inaccuracies of the presentation about Duchenne were painful to listen to.

Living with Duchenne is something we know you cannot possibly grasp.

We get it, really the normal day to day is just not a ‘norm’ in the common household. So any outsider giving his opinion on what John Owen should, could or would do or not do if he ‘tried’ hard enough really would not stir the blood in my veins; honestly I’d take that as the opportunity to explain the science behind Duchenne and that in fact DMD is a genetic mutation that prevents our son from walking any steps because simply his body does NOT product dystrophin because his is missing exon 49 and 40 on his Xp21.

Simple

Right?

Science…. BOOM

Right in front of your eyes and ours, every day. No exon 49 and 50 on his xp21 means no dystrophin, means no muscle regeneration. Science, fact, simple.

Apparently not for the people you pay your taxes to, like Dr. Farkas.

As his clear and irresponsible comments made to this group of moms and dads on 4.25.16 proved. He simply does not, in his highly educated status, understand the science behind missing an exon, duplicating an exon or two or stopping a condon on your xp21……

We are not a PHD, MD, PCNS, DNP, ODE, OND, CDER, MSc, CEO, ODE-I, MS, PharmD, FAAN, MAS, JD, MPH, RN, or any other acronym that costs thousands of dollars to earn.

We simply are

M.O.M.

D.A.D.

And together

P.A.R.E.N.T.S.

And as parents, we see the science working. Though Owen has not given a muscle biopsy so the above acronyms can scrutinize not the dystrophin they would see growing (as most acronyms would do), but they’d scrutinize how much ink was used so to dispute the science behind the drug.

I feel as if I am rambling, but I just can’t get into words how completely disappointed I am with the fight we have with the FDA with regard to Eteplirsen. Ignoring the science in front of them is simply irrational and inexcusable. And I cannot add enough, YOU, US, YOUR NEIGHBOR, YOUR EMPLOYER, YOUR PARENTS ON Social Security…. Etc….. ARE PAYING THEM TO DO THIS!

Congress gave the FDA the ability to listen to patient voices through FDASIA. This group of ‘experts’ decided to focus on the ‘limited’ group of 12 boys and the argument of biopsy’s were not giving them enough data. Then Farkas threw in that boys with Duchenne can spontaneously create dystrophin…. Oh my goodness, what boys? Because we should study them, right? Almost to suggest, Tony Stark himself can show up as Iron Man? What an unreal meeting we were sitting in with this man……

It was a dream world for me on April 25. I simply could not believe the madness. I went to sleep that night thinking two things:

God will move the mountain in His time

And

I want my money back.

Listen to the UCLA video where 13 Global Duchenne Scientist shared their interpretation of Eteplirsen, many of which treating the boys who currently are on Eteplirsen and see the science behind what is working on a daily basis.

UCLA Video

Listen to this quick video from the RACE TO YES

Read the comments in The Wallstreet Journal
and Forbes

At the end of the day – we are all moms and dads, parents of boys with little chance of a life that most boys in your life have. It is a group of people, that each one of us moms and dads would trade their lives to not be a part of.

We’d give it all to simply not know you.

And at the end of the day, this FDA panel let us down.

Looked at the proof in front of their noses, and snubbed them right at us, stating "I want to tell you the truth about Eteplirsen.” Wrong! When Owen opened his own Easter Eggs this year, he told us the truth about this drug.

When Owen moved his books on his desk by himself, he told us the truth

When Owen clears his plate on his own, he tells us the truth,

When Owen bends down and scratches his ankle then lifts his torso back up, HE TELLS US THE TRUTH ABOUT ETEPLIRSEN

This drug will help thousands, but the board, wrapped in their arrogance, rested on the framing of questions instead of science.

What would you do if this was your child? I certainly believe the rage we have inside would be boiling in you as well. Pray, yes, we are 10 days away from the final decision. Pray that on May 26, 2016 the FDA will Approve Etelpirsen.

Then we need you to mostly Act

Come out, be at our Race this weekend, ask your company to donate a product to our Picnic in the Park…. Be present for Owen, because when you do, you are acting on behalf of an enormous community that will, come hell or high water, end Duchenne.

We hope to see you soon

God Bless you
The Dumms

FDA Action Needed Now

3/23/2016

Dear Friends!

This update finds us AGAIN in an urgent state of need. We ask that you AGAIN send your feedback to the FDA regarding Eteplirsen! The FDA Meeting is rescheduled to 4.25.16 and all testimony must be in by April 11, 2016.

We ask that you Act Now and send your letter – you can send the same letter you sent in January – please help us and send this again.

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. He is on week 50 of his infusion and we witnessed him moving his head from one side to another while lying on his belly… this is something he stopped doing YEARS AGO! Neck Muscles are back baby!!

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!

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 Monday April 11!

Send your email to: PCNS@fda.hhs.gov
Email subject line: Written testimony submission for FDA Advisory Committee Meeting to consider Eteplirsen – April 25, 2016
Attn: Moon Hee V. Choi
‘The following is my written testimony submission for the FDA Advisory Committee Meeting to consider Eteplirsen – April 25, 2016.”

Here is a sample of what to write OR you can write in your own words (as long as the above is included)

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

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, GODSPEED ETEPLIRSEN

Please join us on April 9 for our 4th Annual Play for JOA from 130pm-430pm – it is always a great time. Plan on it!!

Tony, Jen, Rutger, Owenand Wade!!! xoxoxoxxo

Still waiting.....

2/12/2016

FDA postponed AdCom for Eteplirsen

We continue to wait, that is what Duchenne families are used to doing, right? Wait.... hurry up and wait.

The FDA postponed the AdCom meeting previously scheduled for January 22, 2016 Meeting of the Peripheral and Central Nervous System Drugs Advisory Committee.

So now we wait..... The approval 'decision' has been moved to May 26, 2016. More waiting

Please keep your prayers laser focused that this group of people can feel the sense of urgency we have to stop duchenne.
-------------------------------------------------
Ash Wednesday Reflection....

We don’t get remission
We don’t a cure
There is no surgery

There is no lifestyle change - we can’t simply ‘quit duchenne’ and expect our lifespan to improve

We wake up every morning with less muscle than we had the day before

We grasp at any new therapy, vitamin, mineral, treatment

We look to our legislators and regulators expecting them to feel the weakness we see right before our eyes, shocked and saddened when their response to our needs are slower than a snail’s pace.

But the one thing we get… I mean we really ‘get’

is to live

I think most of you looking in could be jealous at the shear amount of living we do … it’s a darn shame that it took our diagnosis eight years to wake us up to the fact that we got today

And that is just what we have…. That is what we get

Today

Go get busy living, will you?

if not for you, for John Owen and all our Duchenne boys….

The Dumms

PS - While we wait... we hope you will enjoy the play by play back from 2008 of crazy momma (jen) trying to get the photo for Easter.... 8 years ago Ash Wednesday - these photos feel like yesterday..... Live for Today!!!

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10th Picnic in the Park 7.8.17

Yeah Baby ... Yeah Picnic in the Park ... Baby

Survivor

Mile per mile... we got this

Last 2016 JOA Event, Catch our Spirit!

It's APPROVED! 9.19.16

You did this, We did this, They did this, He did this!

Show us YOUR Strength .....

View from the Tree House

Picnic Tree house and More

. A Glimpse.....

This is a long one...

FDA Action Needed Now

Still waiting.....

FDA postponed AdCom for Eteplirsen

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Past JOA Updates

©2013 John Owen's Adventure, Inc.
JOA is a 501(c)3 nonprofit, EIN 26-2672169
All Rights Reserved
440-570-2167 jen@joainc.org

Yeah Baby ... Yeah Picnic in the Park ... Baby

Last 2016 JOA Event, Catch our Spirit!

You did this, We did this, They did this, He did this!

Show us YOUR Strength .....

FDA postponed AdCom for Eteplirsen

JOA Tweets

Archives

©2013 John Owen's Adventure, Inc.JOA is a 501(c)3 nonprofit, EIN 26-2672169All Rights Reserved 440-570-2167 jen@joainc.org

©2013 John Owen's Adventure, Inc.
JOA is a 501(c)3 nonprofit, EIN 26-2672169
All Rights Reserved
440-570-2167 jen@joainc.org