Now is the Time
Monday night was a huge night at PT for Owen as he kick started the therapy bike all his own and created a whiz of a ride down the little decline in the parking lot. It was fun for him. For me and his therapist, Merri-Jo,
It was Epic.
That tiny little moment in time to see him push his legs through one full rotation of the bicycle on his own brought chills to my spine and tears to the many that viewed the posted video that knew what it was all about.
Strength is never a word I thought I would say with Owen. Sure his spirit is strong, his faith is strong, his love is strong, our family and community – yep strong. But Owen, Strong? With Duchenne, never! Well now is the time for me to never say never again. We see strength in Owen. Right before our eyes, this is working, this drug is doing what it was intended to do. Build Strength.
God has provided an amazing opportunity to show His Strength through Owen and not just in this drug but in Owen’s life and all that He has done to share this life with You. It is amazing that this is something right in front of our eyes that we touch, we feel and scientifically quantify with Strength. To date there are no side effects to Owen, other than having to wake up really early and live stream to his classroom on the way home.
I am not saying that the FDA is going to pull the rug, but they have done it before. We wrote letters and letters 3 years ago, remember? .... begging them to not pull the rug. I will tell you, Now is the Time, especially since the FDA just filed the NDA (New Drug Application) for Eteplirsen. We are approaching an important meeting in November with the FDA and several drug companies on exon skipping. Owen will NEED your strength at this meeting. We will kick off a letter writing campaign when the timing is right and when we ask – you will need to drop everything and get as many of your friends and family on board to tell the FDA….NOW IS THE TIME.
Every day around us, our boys are failing. Now is the Time. We simply cannot wait any longer. Strength for one MUST mean Strength for ALL. We have to continue to raise awareness and funds to derail duchenne.
Come out, will you? On September 20 and see the strength first hand at our Iron Horse Bike Ride ~ Cycle in September. We will meet at Middleburg Hts Municipal Center 15700 Bagley Road Middleburg Heights, Ohio 44130 at various times for our great Sunday cycle. Lunch at noon and amazing music by Natalie Kulka. Visit our events page here to learn about all the rides from a fun ride to an intense 72 miler. Now is the Time to get on board with JOA and strengthen your resolve to derail this beast called Duchenne. It does not stop and neither will we. Help us let other moms and dads never say never again!
“All in for Duchenne” 10.3.15
Dinner / Reverse Raffle to Benefit
Duchenne Muscular Dystrophy
When: Saturday, October 3, 2015, 6pm - 11pm
Location: Sylvania Tam-O-Shanter
Raffle Tickets includes the following: No Tickets available at the door
- Admission to the event $100 per couple
- Dinner by "Jeds Barbeque and Brew"
- TShirt from Braedans Bridge (based on availability)
- Drinks for the Night (Soda, Beer & Wine)
- Chance to win $4,000, $1,000 & $500.00 in the Reverse Raffle
For more Information, Tammy Henegar at firstname.lastname@example.org
Checks payable to Braedan’s Bridge Inc.
WHEN: THURS., SEPT. 10TH
FROM 6 -9 PM
WHERE: BLUE CANYON
WHY: SUPPORT A NEW ADULT LITERACY PROGRAM in El Salvador