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!
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
FDA
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.
THANK YOU!
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.
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.
THANK YOU!
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.
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.
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
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
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