| 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 | |
He is gaining strength. Every week we have the honor of going to Columbus to receive the infusion of the trial drug, Eteplirsen. Every week, he gets just a little bit stronger. Not just on the outside, but the inside… his LVEF raised 7% from the start of the trial to the 12 week marker, in a few weeks we will the 24 week marker, and I know his heart, as well, as all his muscles will continue to be a little bit stronger.
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.
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.
He will kill me for telling you this, but I thought it odd when I tucked him in Monday night, he wanted to keep hugging me and kept kissing my cheek. Something Owen does not do often, to even me. I went to bed realizing that his heart was full from the day’s events and that though he would NEVER tell Merri-Jo, or Aunt Sue or Mrs. Basch or anyone that would ask – He was proud of himself because for the first time in forever, he had it, Strength. I thought to myself as I fell asleep, that even if we can’t get this drug approved, even if the FDA pulls the rug out from this effort – I am grateful for the Strength that I witnessed in him, if just one day, it was there and it was all his.
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.
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.
The same day I write this to you, I read, as can you, on Facebook the horror and sadness of so many moms and dads as their boys continue to struggle, continue to decline, continue to lose strength. One mom shared that her adult son said ‘no’ to a trach even though his lung muscles are failing. Though we see strength in Owen, he is only one of 32 boys lucky enough to receive this drug.
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.
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.
We've got an easy way to help Derail!
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!
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!
Don’t stop after 9.20.15 ~ Get your game on by joining us in Toldeo, OH with Braeden’s Bridge An awesome reverse raffle it is such a great time!
“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
For more Information, Tammy Henegar at [email protected]
www.braedansbridge.squarespace.com
Checks payable to Braedan’s Bridge Inc.
“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 [email protected]
www.braedansbridge.squarespace.com
Checks payable to Braedan’s Bridge Inc.
Talk about Strength… Check these Cleveland Barons Tier 1 Elite U15 Hockey team in Cleveland, Ohio! They have adopted John Owen as they kicked off their season by giving back to the community, specifically to Duchenne by doing the DMD Push up Challenge. This is an amazing group of kids and this effort lead by hocky momma Renee Martinez. Please keep checking out this challenge, heck join up and show us your Strength in Push Ups!!!!
Need a Night Out? How does live music and Blue Canyon apps sound for just $10? On 9.10.15 Join Tony and I as we support our dear friend Joe Vasil as Celebrity Bar Tenders for his Mission Service Swing into Action. We are excited for a great night out and to support this amazing cause - please tip us greatly and we kindly ask that you RSVP so that we may prepare for the evening [email protected]
WHEN: THURS., SEPT. 10TH
FROM 6 -9 PM
WHERE: BLUE CANYON
RESTAURANT PATIO
WHY: SUPPORT A NEW ADULT LITERACY PROGRAM in El Salvador
WHEN: THURS., SEPT. 10TH
FROM 6 -9 PM
WHERE: BLUE CANYON
RESTAURANT PATIO
WHY: SUPPORT A NEW ADULT LITERACY PROGRAM in El Salvador
I don’t want to end this update without a quick family summary…. We simply are awesome! Loving life, getting back into the swing of school. We can’t believe this is Rutger’s last year at St. Albert the Great! He will have an awesome eight grade year. Owen is in sixth grade and loves his teachers and classmates and Wade is rocking third with his bff Joey again in his class. We are so proud of my Godbaby, Megan Kruze, who has started her first year at OSU as a Biomedical Science Major and her goal is to derail duchenne…. Like I said, Now is the time, so get on board and derail.
| Hope to see you on 9.10.15 ~ 9.20.15 ~ 10.3.15 and of course on Facebook Sharing your PUSH UPS! God bless – hold the ones you love tight with all your Strength…. The Dumms |  |
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