Elsa and Brandi after 26.2 10.13.13
Amazing Kick off to Fall for JOA Nils with his family
We experienced some pretty amazing Marathon Moms this Fall. So in love with the steps Brandi Rucinski and Elsa Kilbane gave to John Owen at the Akron Marathon on 9.28 and the Chicago Marathon on 10.13! Their steps and journey were captured on their respective blogs (click their names) but mostly their extreme dedication in their running journey has lifted our souls. Thank you is not nearly enough of what we can offer to these amazing athletes. Combined, Team JOA for Run For our Sons PPMD raised over $13,003.16.
We are so excited to cheer on Nils Antonio as another Marathon Dad sets the stage on Sunday 10.20 to rock Columbus, OH! He has some pretty amazing marathon legs as he kicked it at the Atlanta Olympics as a marathon runner, now he is putting those calf muscles to the test in Columbus OH. Please support Nils through prayer and pocket (click pocket) as he runs his first race after a major injury (that kept him out of Boston ironically). Thank you Nils for your amazing heart and sole as you kick it for John Owen!! Xoxox Walker … not a Runner?
All this running talk has helped me remember the big news!! Moving Spirit officially has a Walking Team for the CLE Rite Aid 5.18.14! Woot – so if you have legs and they work you now have no more excuses!! Join us via Moving Spirit.
Runners for Moving Spirit can also sign up at Moving Spirit– as the Moving Spirit team grows as does our mission to Derail Duchenne one step at a time!
November 2, 2013 What an awesome date!! We have our Chili Cook Off planned with the huge hearts of the Federico Family at Country Stove Patio & Spa Noon to 3 pm! Join us as a Chili Master or simply a taster ($10 at the door) to taste and judge the best Chili in North Royalton.
This is the second year that Country Stove Patio & Spa will open their doors to the JOA Fan club and of course all of North Royalton. Join us – enter your chili here and mark it on your calendar and just plan to be there. Your support for all our events continues to lift our hearts and deepen our strength in that we are not in this alone!!
Earlier that day, JOA will be at the North Royalton Health, Wellness & Community Expo at the North Royalton High School from 9 am to 12 noon! I am so excited about this opportunity to be a specific part of wellness in Northeast Ohio. Not just sharing our JOA journey but encouraging others to join our Moving Spirit Runner / Walker Team, Dodgeball Team, Iron Horse Cyclist or new this year Golf Team – YES I SAID GOLF! We have so many amazing events to get you up off that couch and move in 2014! Join us!
It is a tad early to talk about Thanksgiving, but I am thinking this may be the last blog until the Holiday Season. We just wanted to say that we are so thankful for our JOA community. I have no idea how on earth I would be able to get out bed everyday were it not for you.
Thanksgiving is my favorite Holiday, in that it is all about family and traditions. I tell you I am a stickler for traditions, I won’t even upload the IOS 7 on my I phone… too much change LOL! We are just so fortunate to go into another Thanksgiving with your blessings surrounding us on a daily bases. So Thank you, know we are grateful.
The boys are in the midst of Deer Season. This means quiet weekend nights for me and whichever kid that is not in the deer stand and means amazing bonding time that Tony gets with our boys.
Tony, Rutger and Owen just wrapped up their annual fishing trip in MI. This was Owen’s first time (you have to be 9 to go!) and they caught some pretty amazing salmon. They had an amazing time with Bill Briese, Uncle Bob and several others as they experienced pure Michigan. I gotta tell you, this was a tough one for me. Kinda like your youngest going off to K, right? It was the first time I was away from Owen for so long.
Gosh that sounds horrible as if I am good with being away from the other boys (Tony included). But it is not that, as his primary caregiver letting go was rough for me. But I am so grateful I did and I think Owen was as well. He did an amazing job and held his own on the trip. I am so proud of him!
The boys are all doing very well in school. We cherish every second we have at St. Albert the Great, we love our school family and they clearly love our boys.
Owen’s cardio and pulmonary check ups this Fall were awesome. Simply God at work keeping him strong.....
Because I have no answers as to how he is above holding his own in both areas. All I know is we are grateful for today, for the blessings we continue to receive especially from our friends and our family, from the steps that continue to stomp out Duchenne and the beautiful souls that fill those shoes, to our Chili connoisseurs that will pack the house on 11.2 at the Country Stove Patio & Spa.
Yep, we are thankful
My favorite song regarding Duchenne is “A little bit stronger…” by Sarah Evans. I know I wrote about this song before and still every time I hear it, I think about Owen’s attitude in trying to fight this beast…. Owen, Tony and Pop Pop Game night
“Doesn't happen over night, but you turn around and a months gone by,
And you realize you haven't cried.
I'm not giving you a hour or a second or another minute longer.
I'm busy getting stronger.
And I'm done hoping that we can work it out,
I'm done with how it feels, spinning my wheels
Letting you drag my heart around.
I'm done thinking, that you could ever change.
I know my heart will never be the same,
but I'm telling myself I'll be okay.
Even on my weakest days, I get a little bit stronger.
I get a little bit stronger.”
I hear it and it is so hard not to cry but I have to remember I need to be stronger for Owen and that right now is the most important job I could ever have. So I do it, right? Just a little bit stronger.
You help me a lot with that.
We are rounding into Fall and before you know it we will welcome 2014. With 2013 almost over, we can say it has been one of the most successful JOA years yet. Together we have put over $50,000 into the hands of PPMD and we have another possible $10,000 to add to that with the next few events. With each dollar, with each person made aware of JOA and the beast we call Duchenne, Owen DOES get a little bit stronger. Certainly, you have made our fight amazingly Strong.
So … on to the Strong….
You may know Brandi Rucinski and Elsa Kilbane are using their sweet calf muscles and more to run marathons for John Owen! So far they have raised tons of research dollars as well as many new supporters along the way. Elsa is running the Akron Marathon 9.28.13 and she and Brandi will run the Chicago Marathon (2 weeks later mind you!) on 10.13.13. Click their names to get their story.
Help us honor these super hero marathon moms by attending dinner with them on Tuesday 9.24.13 at Bella Amore 6031 Royalton Road, North Royalton 44133 where 20% of each check will go towards their research dollars to PPMD. Click the flier to download it and share!
Mostly we ask that you support these ladies through prayer as you can imagine running for 4 hours straight will take its toll on you! I am super excited as I get to run the 1st half of the marathon with Elsa on 9.28! I am running a dual cause, for JO and for our friend Ruth Crane’s non profit, Ears to You giving hope and joy to cancer patients. If you can support me through prayer and pocket it would be much appreciated! Please click here to learn more!
Iron Horse Bike Ride We had an amazing turn out for our inaugural bike ride on 9.15.13. We will certainly do this event again and as usual it could not have been done without the dedicated and awesome volunteers we have in our friends and family! If you missed it, you missed a great family, fun event. Chili ~ yeah I said Chili!
Fall is the best time for Chili as well as visiting the cozy atmosphere of Country Stove, Patio & Spa! The two go together now for the second time like peas in a pod thanks to the generous hearts of the Federico Family! They will host the Chili Cook off on 11.2.13 from 1 to 3 pm and again this year all proceeds will benefit JOA!
If you are a Chili Master or a connoisseur please plan to attend this great event! Tickets are $10 at the door, $5 for kiddos for tastes of the best Chili in North Royalton. Any Chili Masters can enter their chili via http://www.countrystoveandpatio.com.
Hope to see you there!!
Latest on FDA and the boys….
As per our last update, the FDA gave the nod to Sarepta (the makers of the 'drug') to apply for a NDA or New Drug Approval in the ‘first quarter’ of 2014. So we anxiously await what 2014 will mean and if in fact we will see the drug that can save his life….
We did get some disappointing news about one of the trials for exon skipping at GSK. But we continue to hold strong, we are ready for the future, whatever it brings.
The boys started school last month and it was one of the more difficult school starts in that we just couldn’t get summer out of our skins! But now that Fall is officially here we just don’t have much choice. We are thrilled to pieces with the tender loving care that is provided to all three at St. Albert the Great. Rutger is in sixth grade and it is impossible for me to admit our oldest is in ‘middle school’. John Owen is soaring in fourth grade with Mrs. Massey and Wade is doing great in First Grade with The Amazing Mrs. Beskid.
The older boys are looking forward to their annual fishing trip with Tony next month, while Wade and I get to spend some time alone!
We hope you can make it to one of our Fall events, just so we get to see you, chat and catch up.
I gotta tell you, this Duchenne stuff, it is so hard.
I mean we are used to the day to day – not that by any means it is easy and Gosh not that by any means we are Martyrs.
But it is the curve balls that are the toughest, the one or two people that put up walls that tear at your strength….
Kinda like the song, you know “I’m tired of hoping we can work it out.” And boy would it be easy if those one or two people were the same ones, they never are. You gotta start all over from ground zero, pleading your case.
Part of the Gospel today struck me like a lightening bolt, “I am too weak to dig and ashamed to beg.” I heard it and it finally all kinda made sense to me.
Tony and I are going to have weak days caring for Owen.
We will always face the monsters that just can’t join our fight to kill this beast.
And it is ok to realize that yes at times, we are just too weak to dig.
But that is why God gave us you, so we don’t have to keep digging and we don’t have to Beg…. So simply that with you and God in our corner we will not give a hour or a second or another minute longer.....
We are busy getting stronger……
Love you all and grateful hearts
PS Thank you for the love, support, chocolate and cards on my recent ‘weakest days’ you all ROCK MY WORLD!!!
“Run, Owen, Run” I heard Wade exclaim this today as they were playing some kind of traffic cop vs. motorist as Rutger (cop of course) was trying to pull Owen over for speeding (in his wheelchair).
Wade, “Run, Owen, Run”
It was a priceless holler to a kid that was doing his best to out ‘run’ the law with a joystick.
And yes, the Law won, as it should. But he still got to have the feeling of running.
I think that was what the Picnic was all about, right? That feeling of running, the wind in our hair, the miles behind our feet and the crowd cheering us on. Yes, we ran on July 27 and this time the law did not win, Owen did. We raised well over $30,000, another record year for us to outrun Duchenne and derail it.
We have our board meeting 8.24 (check out our amazing board will you?) to decide how exactly we will derail this beast and you know we will… with “Run, Owen, Run” in the background.
Thank you from the very depths of our soul. You keep us up, you keep us positive and you keep us believing that we will prevail. God Bless you all!!!
And now to “Ride, Owen, Ride”
Our inaugural Cycle in September Iron Horse Ride is 9.15.13. We look forward to a beautiful Sunday morning / afternoon to celebrate cyclists of all speeds and skill hitting the Cleveland Metroparks for our attempt to derail Duchenne one peddle at a time.
This historic event cannot happen with you. Click the poster to print and share
We need cyclist first off and then we need partiers! The rides kick off on various times in the morning with the goal of all meeting by 1pm at Wallace Lake for a Great Big Party (this is where you non-cyclist come in). Bring friends and family to celebrate this day, live music from Chuck and Scott, free lunch and great Raffles.
Please sign up as a cyclist (family friendly too!!) on our Event Page Cycle in September or sign up to volunteer or sign up to just come for lunch (yep we need a count so we don’t run out of food).
Help make this a success
“Hope, Owen, Hope”
So this is the hard part of this update.
........ Hope ........
......... FDA .........
.......... New Drug Approval ........................
So many of you bled your pens dry writing letters for us to the FDA regarding Eteplirsen and accelerated approval this year.
We have been a bit silent on this since the news came out a few weeks back mainly because we just don’t know how to take it.
The Great News is the FDA heard you, heard us and heard our amazing mom’s (Jenn McNary and Christine McSherry) that worked their tails off to be heard.
We (JOA) has not been given a clear answer, but it seems that accelerated approval will not happen.
However, the FDA gave the nod to Sarepta (the makers of the drug) to apply for a NDA or New Drug Approval in the ‘first quarter’ of 2014.
As Pat Furlong, President of our beloved PPMD, stated this about the filing for NDA
“Today is a landmark day for the entire Duchenne community. Not too long ago, the Duchenne therapy landscape was a barren field with little to no life. Thanks to a commitment to our patients and the field by the U.S. government, international governments, the venture community and industry, this landscape has changed markedly to the point where today we have the announcement for a planned first-ever filing of an NDA for Duchenne.”
As I told Pat, I feel much like Veruca Salt from Willie Wonka. “I want it now!”
Shameful, I know in that Tony and I are so very lucky to have Owen today where so many Duchenne parents, heck even non duchenne parents (yep there are so many fatal childhood illnesses that do not get any attention) do not have their son.
But 2014 is not today
And if it is not today, that means it is not helping Owen’s rapidly decreasing muscle world to STOP decreasing.
So thank you – you were heard, we were heard – and not to belittle all the amazing work done. To me as the mom that has to watch JO’s fears climb daily,
“I want it now.”
Yes, it is selfish. But perhaps that is what I need to be to continue this quest to derail this murderer.
Hope, Owen, Hope and with that we will also Pray.
Come out on 9.15 ~ bike with us, celebrate with us. Take in a beautiful fall day in Northeast Ohio. Take on a little of that “I want it now” attitude and spread that to your kids that instead of watching video games and football games that day, you will spend some family time with us enjoying what God gives us.
Run, Owen, Run….
Love you, Owen, Love
God bless you all
PS ~ Watch the progress of our Marathon Mom’s Elsa Kilbane and Brandi Rucinski as they prepare for their Marathons for John Owen…. Also look for a Dinner Date Night for these great runners… where a portion of your dinner bill will go to their efforts … YEE HAW
PICNIC IN THE PARK 7.27.13 36 x 4 Box Elder Daisy $500 Made by John Owens' grandpa Ray.
It is hard to believe we are just one week away from our biggest Duchenne derailing event this year ~ our Picnic in the Park! We have close to $30,000 in product donations to give away! We are so excited for again we have awesome entertainment, food and fellowship including; Jabez, The Polka Pirates, The Cleveland Breakfast Club, Hole in One, Dunk Tank, JUNGLE TERRY, LASER TAG, PIN BALL, Famous Dave’s, Tommy’s Pizza and Dairy Queen.
Please join us on Saturday July 27 from 4 pm to 10:30 and help us derail this horrific muscle killer! The event is Free and is really as you know all about Celebrating our precious life!!! Silent Auction Owen's Choice "Roadrunner" by Brad Falkinburg in the making
Click here to view the many many raffles! Make a point to be with us!
Thank you also to our many volunteers that always make this night a huge success!
Owen ~July Voice of PPMD We were so excited that Owen was selected as the July Voice for PPMD. He conducted a very cute interview with Will Nolan. Please check him out at this link and share the great work that Parent Project is doing for our boys! FDASpecial thanks to our friend Rachel Manias who literally was pounding the pavement in DC yesterday trying to encourage Senator Brown and Senator Portman to sign the FDA letter urging the FDA to move expeditiously with respect to a request for the approval of the accelerated marketing application for eteplirsen. PPMD, Jett Foundation and our friend Jenn McNary have been working tirelessly to push our government to approve this potential life saving drug….. and still no word, but we are trying.
We had a blast this Wednesday with the 2013 Jett Riders! We had tons of fun in the pool, slip and slide and with our family. They set off Thursday morning for Massilon and will make their way to Point Pleasant NJ on their cycles by August 3! Safe travels and God bless you all!
“You hold him close so you'll never forget how his heartbeat feels
No, you never will”
Monday night, I fell asleep to the sound of a cherished heartbeat. You see, after an hour or so of tucking Owen into bed, he was still awake. He called to me with his shirt up, hand on his chest and tears in his eyes.
I immediately knew he was covering his heart. He said, “mom, this hurts, don’t touch it.” I asked him if I could have a listen to his heart, I did and it was racing.
I looked up and saw that he was crying (not really realizing it when I first came in). I asked him if he was in pain, he said no it just felt weird. I asked him why he was crying, he broke down.
And shook his head
I grabbed his hand and asked kissing it, “Please tell me, honey, you can tell me anything.”
After a few thoughts whirling in his head and a wipe of a tear, he said, “I’m scared.”
It was a calm night, in fact the perfect summer night, no rain, no thunderstorm to fear, no scary movie just watched no homework in sight, (what could he possibly be scared of at this hour?)
“Oh, honey, what are you scared of?”
He said, “You know, my legs, now my arms” then he looked down toward his hand on his chest and I knew then he was afraid for his precious little heart.
(Sinking feeling inside of me…. How to respond?)
I asked him to remember what Dr. Arruda said about his heart at his last visit, he said, “She said it is perfect.”
I told him that she was right and had him repeat that Dr. Carl said his lungs were in great shape.
Few more deep, deep tears, “but I’m scared, mom.”
He gave me a monster hug and I told him that it was ok to be scared, but he does not need to be scared all by himself. I told him we are always by his side and that we love him so much.
After a great long hug, I went to get Tony and we decided he needed to sleep in our bed.
I think we are all pretty much scared, running scared in truth, and really needed each other close to just soak in the present and the love that we hold so deep for each other.
Of course, once settled in Tony and Owen engaged in Princess banter and called each other Princess Leah then went through the manly mental toughness they share. Though I watched as Tony fell asleep soundly surrounding himself with Owen.
As I settled in, he threw his arms around me and snuggled me down so my head was on his heart. I would not move an inch, nor did I for a very long time as I listened to the heartbeat that I hope to never forget exactly how it feels.
No, I never will.
Please join us 7.27.13 and help Owen not be scared anymore…..
God bless you
Pawley Island, SC great time
Wade got a doozy this week – full on toenail / half the top of his big toe STUBBED. So much so, that he will not go in the pool because it hurts too much. Sure sign of summer, right? Swim Tuesday Slip and Slide using our old JOA posters
Running barefoot, carefree and WHAM, there it is.
So at the Dumm’s we are in full swing of Summer. Thankfully, Swim Tuesdays finally arrived all be it late due to our unprecedented and awesome summer vaca.
We had a memory building vacation out to GA, SC, TN all to pick up the new ‘Juggernaut’ (that is what the boys call it) and yes it is a force to be dealt with ~ our new handicap accessible all out Nissan converted cargo van (if this van’s a rockin…) All kidding aside, how lucky are we to be able to transport our clan flawlessly! We picked it up in Georgia (Tony, Rutger and Owen had a heck of a time which included a trip to the Vet and the ER, 2 AM arrival and 3 hour U-Haul breakdown on a GA State Highway with 3 trooper cars …. but when all was said and done they made it) and drove it for 8 days throughout the South vacationing and soaking it all in, because that is what we all need to realize this is exactly what life is all about – SOAKING IT IN!
Our trip delayed our traditional swim Tuesdays and the first one was no different from the last, AWESOME. Those that come, I am thinking, have no idea what it means to be present for JO and for all of us to build memories. As simple as it may seem to sit by the pool for a few hours a week, the fellowship, laughter and joy that is spread can’t be replaced by any video game!
Well, I certainly hope I captured your attention in these first few paragraphs because this update will most likely be the longest yet. If you have not figured it out, I try very hard to be short and sweet. Well the short part is absolutely out on this one ~ so grab 5 minutes and honker down because if you stop reading you will miss A LOT! I hope I can keep you at the ‘sweet’ part!
Picnic in the Park ~ Saturday 7.27.13 I can’t believe this is our sixth Picnic in the Park. We were honored this month to be the feature article in the North Royalton Life Magazine July addition. We had the opportunity to share the history of our picnic and that only 6 years ago was the first time we were overwhelmed with your support! Please consider joining us at German Central on Saturday 7.27 we have fantastic food, music, games and amazing raffles. Most important, it is free to attend! Please share the poster with everyone you know!
We of course count on our volunteers to make this day a smash, please sign up at our volunteer page by 7/10 ~ click here
We plan to put baskets together on 7/5, 7/6 and 7/7 ~ and we need help. Please email me at email@example.com if you can help! It is quite a production assembling all the generous gifts from Northeast Ohio and beyond. Any help is much appreciated!
Please click this poster to download your own to share with everyone you know! We love your support so share it!! Thanks
Check out this auction item in the making, Owen’s Choice “Road Runner” Each year, Brad Falkinburg of Falkinburg Decoy’s creates Owen’s favorite bird and auctions it off at the picnic. Owen’s Aunt Dee has been in competition with Owen’s Uncle Ward each year for Owen’s Choice… so bring your dollars because the bidding gets pretty high for these select pieces!
We will post our auction items in a few weeks, so stay tuned.
Wanna Run 600 Miles? We did! 5.19 our Moving Spirit team ran over 600 miles collectively at the Cleveland Rite Aid. Each step brought us $20,000 closer to a cure! So exciting that Evan Rosberil (9) and Pat Dailey (um well we won’t tell you his age) are the 2013 Moving Spirit Heroes. Please check them out at our Heroes Page.
We were thrilled to give our money raised from this run to PPMD specifically for cardiac research for our Duchenne boys, to learn more about where our funds went, click here.
Ok how about 52.4 then?
Elsa Kilbane and Brandi Rucinski will represent JOA in the Chicago Marathon through PPMD Run for our Sons on October 13, 2013. If you recall Elsa ran the Akron Half Marathon in September 2012 and is our JOA Hero, she recruited Brandi for the Chicago and now we have two lovely soles kicking it for JOA! We so love both of these sweet Marathon Mom’s that inspire us to keep moving for John Owen and to derail Duchenne!
Joe Vasil Burning River 100 Miler
So do you all remember the Energizer Bunny? Well, guess what? JOA has their own official Energizer Bunny in Joe Vasil… he really never quits. His mission is to clearly derail Duchenne each step at a time.
I certainly know John Owen has affected his life tremendously. And if you know Joe, you know he is an avid runner. I am sure I am stepping outside the boundaries by sharing with you what I think about Joe and Duchenne…. I feel that Joe was profoundly affected by Mitchell Jones (10) and his passing early this year, I think, Mitchell’s passing pressed that panic button (that most of Duchenne parents know to well) in Joe. But the thing is, Joe is NOT a Duchenne Dad. Yet he feels it. Some how God has reached in and grabbed this man’s soul with the sense of urgency to cure Duchenne just as if JO was his own son.
How do you follow that with words? Not only do we sense Joe’s commitment to John Owen ~ he has stepped up to do what no one has done for him ……. EVER.
Joe will run 100 miles in a row (yep, straight, no stopping, no sleeping, just running @30 hours or so of RUNNING) for John Owen and to derail this horrific muscle killer that is stealing our baby every day away from us.
You can be there. It is a Cleveland run ~The Burning River 100 . We can all take shifts and run with him, chat with him, cheer him on or provide pocket and prayer support.
A hero like none other.
184.108.40.206 Jett Riders
On the heals of one amazing athlete, we move to many. Teens that give up their summer to ride their cycles across the country to raise awareness for Duchenne! We are so blessed to welcome them into our home on 7.17.13 where we will have a BBQ dinner (please come and do let me know if you can make it we will eat at 6 and all are welcome to cherish these young souls) and send them off to their next stop on Thursday morning.
These kids ride all of July stopping each night at churches or any place that will welcome them from MN to NJ. Occasionally they are lucky enough to land a Duchenne Family that will provide a bed and a meal. They ride selflessly to raise awareness and funds for Duchenne.
If you would like to day ride with them, check out our JOA Jett Ride page
The Fellowship just never ends…. Kilbane Kids Training for the Iron Horse
Owen’s best bud at school was nominated for an Every Day Saint Award for how well he sticks by Owen’s side and takes care of him every single day! When Owen read the nomination letter there was not a dry eye in the house ~ what a blessing he is!
We had a blast with all the end of year Homework Burning School parties! We just so love our St. Albert the Great Families ~ built awesome memories.
We received a donation from our St. Albert the Great Sixth Graders. They participated in an "EconoMart" to end their Economics unit. The students made and sold items and donated their profits! How amazing that this group of kids selected JOA to donated their profits to! Thank you again to the never-ending fellowship that constantly pours out of our community!
Even the Bisler Family and the Schultz Fam got into the JOA spirit by both donating profits from their Lemonade Stands to JO. I really can’t tell you what it means to have these beautiful souls selflessly give to your child. Shows that there is so much more good in the world than bad!
Bridgestone Tickets Great blessing to have the opportunity to benefit from those that love to golf! If you are attending the Bridgestone August 2013, please consider buying tickets through JOA! Click here and use the code BALL13. 9.15 Iron Horse Ride Picture of Owen's bones.... creepy and cool
Our First Cycle in September is right around the corner! We were so inspired by the Jett Riders that we decided to do a cycle race this year! Board member Jennifer Briese is coordinating our first ever bike event on Sunday September 15 so plan on joining us for a Sunday afternoon of good times as we derail duchenne on pedal at a time!
Register now for an awesome Sunday morning ride followed by a picnic lunch (all are welcome to attend the lunch) to celebrate this great event! Click here for all the info
How are we doing? Men at work - The boys with our neighbor
On every given day, we will say great. Because that is who we are. We are lucky, we are great, we are blessed, we are here.
Does not change the fact that on every given day Owen gets weaker.
Gosh, I hope not, but Spirit
We had our first full body bone scan (Dexa scan) last week. I did not hear anything until a few days later - so in my mind were golden. ‘Ah, yeah, this is Duchenne Jen, nothing is golden here’, bone loss (and I have NO idea what a -2 means, good bad or indifferent) the extremely rushed doctor’s voice on the other end of the voice mail clearly was not going to indicate good bad or indifferent in rattling off the results… but all in all it is still a decline.
At times, it is so hard to keep a positive face because we know what the future currently holds. But we maintain hope in the break through therapies that are out there through GSK and Serepta. As of this writing, we have not heard from the FDA if they will approve Eteplirsen. But we maintain hope that what is to be will be.
We try so hard every day to be present for everyone we love, not just John Owen. Keep reminding ourselves to stop and enjoy the moment because that is all we really have. I often find my self reading our Heroes Page to keep me strong and inspired by the phenomenal people that give so much for John Owen and Duchenne. Then of course all I really have to do is look to my wonderful husband and three kids in that I am lucky enough to hear and know how much love there is between us. The list could go on as to how lucky we are with the support of our family and of course each of you reading this. I guess we have to expect the heartache with the joy, you can’t have one all the time (thank goodness for that!)
We hope you will stop by one swim Tuesday to say hi. We certainly hope you join us on 7.27.13 for our biggest event this year. And finally, we hope that you get to really get out and start living, stub a toe, cry, laugh, live!
God bless you and much love
The Dumm Family
We have such an exciting week; I feel the energy of our Moving Spirit Runners in the air! We have 120 legs that will hit the pavement this weekend to participate in the Cleveland Rite Aid Marathon ~ all legs on board to derail duchenne for John Owen and all our duchenne boys!
I have to admit I am a bit nervous about running my first half marathon. But literally, the spirit behind us will get me through it, dare I say 13.1 miles will be Easy Peasey?
Please keep our 60+ runners in your prayers this weekend as we run 590 miles collectively to wipe out this muscle killer! There is still time to donate, visit www.joainc.org and send in your support!
Be sure to Catch Channel 19 Action news on Wednesday 5-15-13 to see the interview with Moving Spirit runners Evan Rosberil (9) and Kelly Beskid – Yee Haw
An extreme heartfelt thank you to all of our Moving Spirit Runners for their amazing dedication to Owen! Xoxox
- It is a LONG list so keep reading the update at the end of this list!
- Jen Agoston 10k
- Lisa Arnold Half Marathon
- Dan Beskid 10k
- Kelly Beskid 10k
- Bonnie Bosela 10k
- Jean Brennan 10k
- Christine Buchert Half Marathon
- Roseanne Condrich Half Marathon
- Benjamin Crane 10k
- Ruth Crane Half Marathon
- Kyle Croucher 5k
- Tiffany Croucher Half Marathon
- Mary Ellen Dailey 10k
- Jodi Daprano 10k
- Jen Dumm Half Marathon
- Deborah Factora Half Marathon
- Ronan Factora Half Marathon
- Irene Fitzgerald Half Marathon
- Len Gonet 10k
- Theresa Greinert 10k
- Natalie Guzzo 10k
- Caroline Halle 10k
- Amy Hammer-Huber Half Marathon
- James Harrison Half Marathon
- Annie Henry 10k
- Becky Hudach 10k
- Tom Hudach Half Marathon
- Amy Irwin 10k
- Dan Irwin 10k
- Sally Kapcar 10k
- Christie Kinney 10k
- Lisa Mares 10k
- Lisa Mares 10k
- Kim Mckendry Half Marathon
- Chris Mcmonagle 10k
- Vickie Mcmonagle 10k
- Nikki Mikulasik Half Marathon
- Nikki Mikulasik Half Marathon
- Kelly Morgan Half Marathon
- Dena Pike Half Marathon
- Katie Quintus Half Marathon
- Dino Raffin 10k
- Lori Raffin 10k
- Debbie Ranallo 10k
- Dennis Reardon 10k
- Jack Reardon 10k
- Julie Reardon 10k
- Kate Reardon 10k
- Amy Richards Half Marathon
- Daniel Richards Half Marathon
- John Robison 5k
- Melissa Roddy Half Marathon
- Evan Rosberil 5k
- Jennifer Sanders 10k
- Jeff Schorr Full Marathon
- Maria Schorr Half Marathon
- Kathy Schroeder 10k
- Peg Sonday Half Marathon
- Amy Stauffer 10k
- Jeremy Stauffer 10k
- Julie Steel Half Marathon
- Carrie Valdez 10k
- Jennifer Whittier Half Marathon
Many have received the letter from Mary E. Kremzner fro the FDA regarding your letter to urge them to work with Serepta on the miracle drug Eteplirsen. Some took this letter as bad news and some as good news.
I will tell you this is AWESOME news! Though the drug is not to market yet, the FDA heard you and continues to hear the voices of Duchenne mom’s Jenn McNary and Christine McSherry as they forge ahead as the parent advocates directly speaking with the FDA on this issue. I firmly believe without your support, the FDA would not give these ladies the time of day! As an entire Duchenne community, we did it! We pulled together throughout the nation to let our voice be heard.
Christine McSherry is the leader of Duchenne Alliance (an international group of non-profit moms and dads just like us). She has several excellent articles on the progress of our efforts. Please click these links to read her blogs.
We have amazing faith that this drug will get to market soon. Also noteworthy is GSK’s efforts to compete with Serepta. GSK also has an exon-skipping drug now in its third trial phase. Competition in the marketplace as you know is fantastic and if we can get BOTH drugs to market that means we have a better shot at saving our kiddos! Click here to read about disapersen GSK drug.
PLAY FOR JOA, DANCE FOR JOA
We had two incredible family events this Spring. Play for JOA was our inaugural dodgeball tourney! Great success and so much stinking fun that many want to do it again very soon. This is definitely an event we will do every year! Special thanks to Amy Schultz, JOA Board member for her hard working in making this a huge success.
Dance for JOA hosted by North Royalton Dance Academy, Amy Stauffer and her team was amazing! May 4 we enjoyed tons of food, a huge raffle and of course, MUSIC baby! The kids really love this event and had an absolute ball! We are looking forward to doing it again next year! Thank you NRDA Team – JO was thrilled as were we to be there!
HAPPY MOTHER’S DAY!
Belated Happy Mother’s Day to all our awesome moms out there! We had a great weekend celebrating my mom’s 70th birthday and then a fantastic mom’s day!
We also celebrated Rutger’s 11th birthday (pictured here opening his gift of cold hard cash – we froze money in ice)! We cannot believe how fast the time flies, just yesterday he was barely 6 pounds and now is one the most responsible, gentle children I know. What a great mother’s day knowing that I am lucky enough to have the best kids and husband around! Hope you all enjoyed it.
PICNIC IN THE PARK We are only months away from our biggest event of the year! Plan on joining us on Saturday 7.27.13 from 4 pm to 10:30 at German Central for a fantastic family centered night out! Live music by The Polka Pirates, Jabez and The Cleveland Breakfast Club. New this year is Jungle Terry (4:30) and Pin Ball (bring your quarters baby!).
We are still accepting donations, if interested please use this pledge card or call me at 440-570-2167.
Our blessings continue as we continue receiving your support and prayers. Thank you for all you do for us in lifting our hope that one day John Owen and all his Duchenne brothers can thrive!
Remember to keep your prayers on our team this weekend as we Run to Derail Duchenne God bless you,
Tony, Jen, Rutger, John Owen and Wade
Here we are ~ facing another Spring and in Cleveland ~ ya never know what you get ~ in our case cold, snowy and no signs of warmth yet…. But all is well, as we keep busy here at the Dumm household fighting off cabin fever with video games, warm fires, movie nights and game night with Pop pop.
At times, I get these waves of emotion as I look around our home, our family, our parish, school and community. The enormous support to help us raise our boys and specifically to keep the ‘normal’ in John Owen’s life often makes me weep. They are mainly happy tears but sometimes I let the sad creep in. It is so easy to mourn for the future and my goal has been with the passing of Mitchell Jones (what a profound impact his short life had on me in the past few months) that I have to rejoice in the NOW. I think that is the hardest part, right? Keeping in the ‘today’, not worrying about tomorrow and not allowing the ordinary of today be overlooked as the real Gift that it is.
Bring on the Celebrating!So today (3.23.13), we celebrated with St. Albert the Great and ran their Great Race! It was awesome, 26 degrees and yet so many still came out and got their running legs going. We were so thrilled to see the JOA Moving Spirit running team out! Five of our teammates placed! If you still have that running bug and don’t know how to quench it give us a shout and you can join our team to train for the Cleveland Rite Aid and derail Duchenne with your steps ~ firstname.lastname@example.org.
Elsa center at Rite Aid 2012 with JOA mates
Talk about Running Bug! We are blessed to have two marathon mamma’s in 2013! Elsa Kilbane is back at it this year and Brandi Rucinski (both St. Al moms) are running the Chicago Marathon for John Owen via Parent Project Muscular Dystrophy Run for our Sons! Please support their efforts through prayer and pocket as we share more about their journey in months to come!
Our Play for JOA is underway ~ 4.14.13 at the North Royalton Field House come out and enjoy an afternoon dodge ball tourney. Entry fee is $5 and the time slots are geared toward the perfect age groups. JOA Board member Amy Schultz is hosting this event and we are so thrilled to have her relentless dedication to making this a great success. Sign up at http://www.joainc.org/play-for-joa.html
As I mentioned in the first newsletter of the year – you never know what North Royalton business is going to surprise us with an event!!! Dance for JOA is here and on 5.4.13 North Royalton Dance Academy will host this family centered dance at NR YMCA. What a blessing to have Amy Stauffer and her beautiful team set out and make sure for the 2nd year in a row, that they are taking care of John Owen through what they do best…. Dance Baby!!! Sign up at http://www.joainc.org/dance-for-joa.html
The Jett Riders will be back in Cleveland and at our house on 7.17.13 – we are so excited to meet them again! As you recall these teens take their summer break to ride their bikes across the USA to raise awareness and funds for Duchenne. It is not too late to become a Jett Rider or if you are interested in a day ride with them in July – hook up with me and we will get it on!!! email@example.com.
Our Picnic in the Park plans are coming along great 7.27.13. We have Jabez and The Breakfast Club booked for a fantastic night of music, Famous Dave’s, DQ are in again this year and tons of kids games. Though I feel like we lost our star quarterback, head fundraiser Micki Gura~ she is taking a much needed year off. So that means the rest of us need to kick it in to gear for these donations! If you can help out recruiting donation please let me know – or simply ask your boss if s/he can donate on behalf of your company! Every donation is cherished!!! Click here for the pledge info. Oh and don’t forget to sign up to Volunteer at our PIP we have the best volunteers in the world ~ http://www.joainc.org/volunteer-opportunities.html
FDA and all that jazz……
So no real news yet on the exon-skipping drug called Eteplirsen and Sarepta. One thing is for CERTAIN ~ the FDA heard us loud and clear in our efforts to urge them to seriously look at Eteplirsen. Thank you again for the outpouring of support by sending FDA letters! Jenn McNary (the main VT mom that led this effort) has personally met with them twice now – which is a HUGE success! We have dialog baby!!! We are anxiously awaiting the Sarepta visit with the FDA and news from that. Keep the prayers coming ~ we need some medical breakthroughs to hit the market fast ~ our boys CANNOT WAIT.
Owen asks me every now and then about when he is getting that drug, ‘you know the drug that can help me walk again.’
So how do I tell my nine year old the stark cold reality of Duchenne?
I just can’t.
All I can say is ‘soon, baby, soon.’
On a lighter note, we continue to be blessed with the elevator addition. The boys love their new room and we love the freedom it has given Owen!! Grades are very good at St. Albert the Great ~ Wade and Kindergarten is a perfect match. Owen’s third grade class is awesome and we so love Mrs. Kaminski and Rutger continues to excel in fifth grade with Mrs. Vantusko! Only a few more months left until Swim Tuesdays!!! Can’t wait. The boys are already saving their homework to burn at our end of year school party!
As we approach Holy Week we do want to wish everyone a very blessed Easter Season. As we know, Easter is always a sign of new life, the life that we are so grateful for as we are so very grateful for all of you and your constant support. Happy Easter ~ here is to a beautiful Spring and rejoicing in Today – everyday!!!
God bless you ~ The Dumms
It is hard to believe that Owen just turned nine, nine on the ninth what a milestone! We had a fantastic week celebrating his birthday. I was even told that when his birthday was announced in morning announcements at school, classrooms cheered! It is impossible to describe how that makes Tony and I feel. We know he is loved. What more could parents want than love for their children?
So not just did we ‘feel the love’ on his birthday, we have been overwhelmed by it thanks to all of you. We sent our plea out via the mail requesting you to send letters to the FDA and urge them to support an accelerated approval of Eteplirsen (click here for the primer on Eteplirsen – fascinating). The responses from you have been so much more than we expected; high schools, firehouses, workplaces, neighborhoods, bus drivers, parties, church events – it seems that our request has lit Northeast Ohio on fire!
Owen asked us the other day at dinner, “so when are they getting me that medicine?” Meaning Eteplirsen…….all I could say was 'soon baby, very soon I hope.' The FDA can’t ignore John Owen now with your efforts and we THANK YOU so very much for that!
We are planning a fantastic year of JOA events! Moving Spirit is back baby! If you have ever been interested in running and just did not have the motivation ~ we got it for you! Join our spirit and train with the most wonderful group of people ~ all running levels are welcome! Check out our Moving Spirit Page for details. The Rite Aid is 5.19.13 and we are going to kick Duchenne’s butt one-step at a time! Training starts January 31 ~ what a great way to start the year.
We are looking to score a Play for JOA event in the Spring. It will be a Sunday afternoon Dodge ball tournament for all ages. We are super excited about this gig and hope to get it underway soon with details ~ so if dodge ball is your fancy, stay tuned.
Our Picnic in the Park is 7.27.13! We are gearing up and as always welcome donations to the huge basket raffle! Check out our pledge card and share it with your workplace ~ then go mark your calendars for a Saturday of Family Fun!
Cycle in September will hopefully be an annual event! So if your not a runner, dodge ball'r or picnicker…. You can cycle with us! 9.15.13 plan to spend Sunday morning with us whether an avid cyclist or just out for a family ride, we have the plan for you. You bet we have a page for that, check it out!
Hmmm, I think the only thing we are missing here is an adult night out for JOA…. That may be in the works… we never really know what fantastic surprises our local businesses will offer to JOA throughout the year. We are always so lucky to have events presented to us, like the Chili Cook off at The Country Stove, Patio & Spa this past October. So just stay tuned!
So – how are we doing?
It is always a blessing to run into you guys when we are out and about and you always want to know how we are. And more specifically how Owen is doing.
The start of 2012 was very hard with Owen’s leg muscles given out completely. It sort of set the stage for us to ‘accept’ this speedy progression of this horrible disease. If you’ve kept up with the updates you may have seen bits and pieces of Owen’s medical appointments, but summarizing it, as I will, is really quite overwhelming:
As I said, we started the year with no more walking. In February, his echocardiogram indicated ventricle function decrease, his lung work up early in 2012 showed a decline…it felt like .. ‘ok get ready because here we go.’
We were set on accelerated check ups with all the ‘gists’ in our life (neurologist, cardiologist, pulminologist, etc) ~ BUT, by December 2012 our worst fears were simply wiped away. His lungs checked in at a ‘sustained’ level, his heart had an IMPROVED ventricle function confirmed with an MRI (in Sept) and his muscle strength had STAYED THE SAME since the last PT assessment from January 2012~
In short, 2012 started with the expectation of steady decline, when in FACT, God did not allow a decline at all. We are stable baby! Not sure how long we will be that way, Duchenne is still Duchenne ~ but we graciously take stable for today and I believe your prayers, our prayers are working! So don’t stop!
No worries... it is grape juice
The boys had a great Christmas in their new room and of course with the new elevator. We had tons of family time, Rutger got his second deer, Owen tried very hard to get his first one but didn’t quite work out this year and Wade, God gave us Wade to keep us laughing! He started wrestling this year and is so darn grown up. All three are doing great at St. Albert the Great, excellent grades and being Tony’s sons, we keep crossing our fingers that none will be ‘expelled’ soon......…
Tony and I are doing very well. We cannot express how blissful we feel each time we see Owen scooting through our home. What our family and friends have done for us this past year in making the modifications to our home was not just a ‘remodel,” they made our house our home for Owen's life and for OUR LIFE!
Not sure what more we could ask for ~ we are simply the luckiest parents on earth. Thank you again for all the ever-loving support, now go get loving on your family.
We’ll see you soon,
PS ~ The best part of life is finding those moments that just make you laugh ~
We cannot believe it is OCTOBER and the last time we chatted was JULY! So much has been going on around here, all good stuff, but it has been impossible to sit down and connect with you guys! So here we are, we are already scheduling time with our friends for the end of NOVEMBER… eekk where did the year go – Christmas is right around the corner! Life baby…. It moves fast.
That brings me to our Christmas wish from last year… I am thinking I can talk about it now on JOA since it has been granted, installed and functioning!!! Last year on Majic 105.7 John Owen posted his “Holiday Wish” as the commercial said… “grant your wish on …..” It was pretty simple, he wished for an elevator in our home so he could share our entire house with us. Well, we did not hear back from the radio station…… but God certainly heard us!
Our Marathon Dad, Joe Vasil read the post and in one short week he assembled a huge group of our family and St. Albert the Great family who set out to grant Owen's wish. On Christmas Eve 2011 at least 10 cars pulled in our driveway, this amazing group of people got out and started singing “Hark the Harold Angels Sing” until we came out – then handed Owen his Christmas Wish…… a Pledge to Build our Elevator!
And they DID IT!
This photo of Joe and Owen was taken in August during the construction as Joe handed Owen 'the check'. I really have not allowed myself to wrap my brain around this… finally starting now and each time I do…. I cry pure tears of JOY. It is unreal as to what our Community has done for our son, what our school family has done for our son and what our family has done for our son…. It is like Christmas every day as Owen rides up and down between floors……So if you are reading this and you were part of LIFT THEM UP - please send your family photo our way so we can see your beautiful faces every day we Lift him up!!!
THANK YOU THANK YOU !!!!! Check out his first ride~
….How do we follow that? How about with our MARATHON MOM'S
Elsa Kilbane and Irene Fitzgerald, both running to derail Duchenne.
Elsa just starting her marathon bug and Irene ending her Marathon career of 25 yrs. Please visit Marathon runners
to learn about these awesome moms that keep our Moving Spirit alive and used all their might to Derail Duchenne…
They are also our newest Heroes... please check all our Heroes
A Great Fall Tradition ~ YUMMO
We are so excited about Country Stove, Patio & Spa’s Chili Cook off on 10/27/12. Gloria Federico and her staff have dedicated their first cook off to JOA and want to help us Derail Duchenne! Click here
to read more and sign up (scroll to middle). Tony and I will be competing in the cook off and we encourage you to come out and support us! 12 to 3 pm on Saturday 10/27 – what a great way to spend a Fall day! Thank you so much Gloria for your support.
Ladies that love to shop….
Local or not – you can participate in this cool fundraiser! Our friend Alicia Brown is a Scentsy and Grace Adale consultant and has opened her on line store to JOA! You guys out there – shop here for your sweeties for Christmas….. right – easy peasy! Ladies please check out these great sites, you will find gifts for everyone and something special for yourself! 100% of the profits will go to JOA! Thank you Alicia! Click it... Scentsy Grace Adele
Taking LEGO to HEART
I love this picture… it is Owen’s Healthy Heart..beating!!!!! We visited OSU last month to discuss a heart study and the result was this beautiful image of his perfect heart! We also got to meet a very cool team of doctors at OSU that are working diligently to keep this heart and all Duchenne hearts beautiful through cardiac research.
Owen was treated to a private tour of Dr. Janssen’s LEGO world… if you know Owen ~ you know he absolutely adored this experience! Dr. Janssen is an amazing Lego Designer in his spare time. He built the entire OSU Stadium out of Lego’s (check it out here)
and has turned that passion into a fundraising project.
For a donation of $20 or more, he will put a little LEGO person in the OSU stadium in your name (that is Owen in the front row at the Horseshoe). The goal is to fill the stadium…. Yep that means tons of needed $ for our precious little hearts...Please donate to Heart/Muscular Degenerative Diseases Research Fund (313809) click here for the link.
Thank you to Dr. Paul Janssen; Associate Professor of Physiology and Cell Biology, Associate Professor of Internal Medicine, Cardiology at The Ohio State University and his team for doing what they do every day..... derail duchenne!
| |Welcome new board members!
We are thrilled to welcome Jennifer Briese, Ashley Gay and Amy Schultz as JOA Board members, please check them out on our JOA Board page
. We are honored to have their service.
Well let’s end with the best news…. Shall we?
Eteplirsen is derailing Duchenne
Just out last week was the news about Sarepta Therapeutics
(bioresearch firm) 48 week human trial results for a drug designed to ‘skip’ exons and the results were extremely encouraging
! What does all this mean? This company (and one other, GSK) have been working diligently to develop a drug to slow the progression of this muscle killer, this study has shown through 12 boys that the drug is working!
Although it is fantastic news, the actual FDA approval and getting that drug into our Duchenne boys that can benefit (13% of our DMD boys, Owen included) will take some time, of course time that none of our guys have
. We have been watching this drug for five years (since Owen was diagnosed) and have waited painfully long to see it finally get into boys in the U.S. and get these result.
So pray for speed
, pray that the FDA doesn’t hold this up
, and pray that if this is to be, then let it be and let it be RIGHT NOW! We are very excited but also not counting on this to be the answer…. Not yet anyway.
Wow… so much in this update because as you know this train is never stopping until we derail this darn thing!
All the boys are doing so well and we have thoroughly enjoyed the start of Fall, which was kicked off by our nephew Weston’s wedding to his beautiful bride Lauren.
School is great for all 3 and can’t believe that Wade is now in school with his brothers in Kindergarten ~ I had tears in my eyes this morning as we prepared his “All about Me” photos – he has grown so fast and still continues to be the one that always makes us laugh.
Rutger is enjoying fifth grade and is gearing up for hunting & wrestling season. He had another banner Fishing trip with Tony in Sept - check out his catch! We are so proud of the young man he is becoming! He continues to be such a responsible big brother,what a joy he is.
Owen of course is loving his elevator and doing very well in school. His heart update was a great relief and every day we are thrilled to pieces that we have our beautiful three boys to cherish….
So go on now, shut this off and go give the ones you love a great big hug!!
We will catch up again soon until then ~much love
Tony, Jen, Rutger, John Owen and Wade xoxox