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!
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~
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 out also!
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 out also!
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.
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
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.
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.
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.
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!
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
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
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