Calling All Volunteers!
We are actively seeking our loyal JOA Volunteers to sign up for the JOA Picnic in the Park! 7.9.16 any help you can give please sign up here http://www.joainc.org/volunteer-opportunities.html Or email Monica Bibyk at [email protected]
We are so grateful for the 150+ friends that come back year after year to help JOA #derailducehnne!! We need your help!!
This is our biggest Duchenne derailing event of the year ~ our Picnic in the Park at German Central in Parma OH! We have thousands in product donations to give away! 2016 will bring back our awesome entertainment, food from Fire Truck Pizza Co, Mama Mias Foods, Famous Dave's, DQ, and fellowship including; Victory Highway, James Gerard Band, JUNGLE TERRY, LASER TAG, PIN BALL, Hole in One, Dunk Tank, Mama Mia's Sausages and Dairy Queen.
We are actively seeking our loyal JOA Volunteers to sign up for the JOA Picnic in the Park! 7.9.16 any help you can give please sign up here http://www.joainc.org/volunteer-opportunities.html Or email Monica Bibyk at [email protected]
We are so grateful for the 150+ friends that come back year after year to help JOA #derailducehnne!! We need your help!!
This is our biggest Duchenne derailing event of the year ~ our Picnic in the Park at German Central in Parma OH! We have thousands in product donations to give away! 2016 will bring back our awesome entertainment, food from Fire Truck Pizza Co, Mama Mias Foods, Famous Dave's, DQ, and fellowship including; Victory Highway, James Gerard Band, JUNGLE TERRY, LASER TAG, PIN BALL, Hole in One, Dunk Tank, Mama Mia's Sausages and Dairy Queen.
NERF BATTLE NEW THIS YEAR!
BYO Nerf Dart and safety glasses ~ we supply Dart nerf bullets! So excited! $5 per half hour to BATTLE!
We are still in need of product donations - please ask all you know to help us make this an amazing event - click here for the request
Please join us on Saturday July 9 from 4 pm to 10:30 and help us derail this horrific muscle killer! The event is Free to attend and is really as you know all about Celebrating our precious lives!!! #derailduchenne
BYO Nerf Dart and safety glasses ~ we supply Dart nerf bullets! So excited! $5 per half hour to BATTLE!
We are still in need of product donations - please ask all you know to help us make this an amazing event - click here for the request
Please join us on Saturday July 9 from 4 pm to 10:30 and help us derail this horrific muscle killer! The event is Free to attend and is really as you know all about Celebrating our precious lives!!! #derailduchenne
FDA Decision
The FDA still has yet to make a decision on Eteplirsen. Decision day was to be 5.26, but instead they offered a delay.
Hurry up and wait.
I’ve got nothing on this. Some say it’s a good sign, some say not so much. I have no idea. All we know is this drug is working in Owen. It is a damn shame that it is not available today for every child it could help. Actually, not a damn shame, actually, I think it is a crime. But we are just one voice, one family, stuck in the rut of government red tape. I better stop here.
On to better news. Brighter News….
The FDA still has yet to make a decision on Eteplirsen. Decision day was to be 5.26, but instead they offered a delay.
Hurry up and wait.
I’ve got nothing on this. Some say it’s a good sign, some say not so much. I have no idea. All we know is this drug is working in Owen. It is a damn shame that it is not available today for every child it could help. Actually, not a damn shame, actually, I think it is a crime. But we are just one voice, one family, stuck in the rut of government red tape. I better stop here.
On to better news. Brighter News….
MAKE A WISH
Owen’s Make a Wish Tree House should start in the next two weeks. Every day he is asking about it and all the boys are so excited to see this dream come true! They are so excited to share the space with cicadas that are crowding our back yard.
I won’t get into the cicada details, but all I can say is our boys will be able to survive on any protein God provides them.
We had an amazing last day of school yesterday…… here is a glimpse of it….
Owen’s Make a Wish Tree House should start in the next two weeks. Every day he is asking about it and all the boys are so excited to see this dream come true! They are so excited to share the space with cicadas that are crowding our back yard.
I won’t get into the cicada details, but all I can say is our boys will be able to survive on any protein God provides them.
We had an amazing last day of school yesterday…… here is a glimpse of it….
A glimpse 6.2.16
When Owen was first diagnosed, I thought it impossible that the day would come when Duchenne did not consume my every thought. Early in those days, there were times that all I could do was think Duchenne and somehow managed to fake my way through the fog into reality.
But you know, there has always been a glimpse.
Sometimes I would know I was in it, sometimes, I’d have to actually look back on that memory to realize, it was just in that moment I wasn’t living in Duchenne.
I was just living.
Today was just an amazing day, when we turned the corner from the tunnel at the base of Progressive Field and saw the shadowed images of the boys and their friends as they entered the field, that was my glimpse for today. It took my breath away knowing that in that moment, we did not have Duchenne.
When Owen was first diagnosed, I thought it impossible that the day would come when Duchenne did not consume my every thought. Early in those days, there were times that all I could do was think Duchenne and somehow managed to fake my way through the fog into reality.
But you know, there has always been a glimpse.
Sometimes I would know I was in it, sometimes, I’d have to actually look back on that memory to realize, it was just in that moment I wasn’t living in Duchenne.
I was just living.
Today was just an amazing day, when we turned the corner from the tunnel at the base of Progressive Field and saw the shadowed images of the boys and their friends as they entered the field, that was my glimpse for today. It took my breath away knowing that in that moment, we did not have Duchenne.
In that moment we had the once in a life time of walking on to a major league baseball field to soak in our glimpse.
We’ve had a lot of these amazing views this year. Owen being part of the trial, the Gala, being the 2016 Courage Award Recipient, the Make a Wish Tree House planning….
And Today… amazing day ….. .The last day of school!! Trip to the Zoo with our besties…. The clear start of summer…. Meeting a ton of the Tribe Guys who so graciously signed ball after ball and talked to our kiddos right before their game… and of course the amazing win tonight as Mike Napoli’s hit got Frankie home for the win… hearing the crowd roar and seeing all the boys screaming and cheering…..
A glimpse
So many that keep building on each other helping to push out the dense fog of Duchenne. Though still lurking and though still silently stealing, we have just been lucky enough to ignore it for a little while.
Long enough to make memories
Long enough to look back at the glimpse and forever keep it within our soul, right on the surface so we can easily pull it up when needed.
Thank you for being part of our glimpse today and every day.
Thank you Mike Napoli for sharing your glimpse with our family….
Do me a favor, tomorrow, make sure You go get your glimpse on …..
~~~~~
We look forward to seeing you this summer! Please come out and support our Picnic in the Park on 7.9.16
We’ve had a lot of these amazing views this year. Owen being part of the trial, the Gala, being the 2016 Courage Award Recipient, the Make a Wish Tree House planning….
And Today… amazing day ….. .The last day of school!! Trip to the Zoo with our besties…. The clear start of summer…. Meeting a ton of the Tribe Guys who so graciously signed ball after ball and talked to our kiddos right before their game… and of course the amazing win tonight as Mike Napoli’s hit got Frankie home for the win… hearing the crowd roar and seeing all the boys screaming and cheering…..
A glimpse
So many that keep building on each other helping to push out the dense fog of Duchenne. Though still lurking and though still silently stealing, we have just been lucky enough to ignore it for a little while.
Long enough to make memories
Long enough to look back at the glimpse and forever keep it within our soul, right on the surface so we can easily pull it up when needed.
Thank you for being part of our glimpse today and every day.
Thank you Mike Napoli for sharing your glimpse with our family….
Do me a favor, tomorrow, make sure You go get your glimpse on …..
~~~~~
We look forward to seeing you this summer! Please come out and support our Picnic in the Park on 7.9.16
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