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 ~ email@example.com.
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!!! firstname.lastname@example.org.
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