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.
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.
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
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.’
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