Seems like a long time ago, Kimberly and I went to the Starting point of the Disney Marathon. I had no idea what to expect, having never watched a marathon and absolutely no desire to run a city block let alone 26.2 miles. One mom had called Kimberly to talk…Continue
Added by Pat Furlong on January 30, 2012 at 2:30pm — No Comments
I'm trying to connect with individuals with BMD or the families. I have a 15 year old brother with BMD and would love to talk with others about their treatment plans, etc.
Added by Brooke Wagoner on January 25, 2012 at 5:49pm — No Comments
On Jan. 9, 2012, I recieved confirmation that my son Preston has Duchenne's. It will not be untill May that he is seen in the muscle clinic. I am wondering if there are any families that can help me fill in the blanks as to what to expect. I would also like to speak to families from Saskatchewan or Alberta Canada, regarding the services I can access for my son. Thank you.
(copied from my personal blog)
So often I learn about some new obstacle that a person in a wheelchair faces. Not that I use a wheelchair. But my son does. He has duchenne muscular dystrophy. He was diagnosed at 5. Before that time we lived in the cozy, luxurious world of what we thought was good health. Sure he fell sometimes. He had trouble walking up the stairs. But surely whatever was causing such a thing couldn't be that serious. Could it? I read once of a bereaved father…Continue
PPMD President Pat Furlong and Colorado FACES Coordinator Ivy Scherbarth co-blog about the older patients in the Duchenne community, and what we can learn from the journeys they have been on. They are the real Duchenne experts. We hope that after you read these entries, you'll post your own thoughts on the topic.
Listen & Learn…Continue
PPMD Run for our Sons Whitehorse Trail Marathon and half marathon Aug. 2012!! Please sign up and run the world famous Yukon /Klondike trail Marathon in 2012. Hike the famous Chilcoot trail from Skagway Alaska over the White Pass into Historic Log Cabin BC Canada!!
With deficit reduction remaining a top priority in Congress and a $1.2 trillion spending reduction on the horizon, 2012 will be a critical year to protect Duchenne research and public health priorities. For this to happen, we need your voice on Capitol Hill now more than ever before. Whether that be by joining us in Washington at the Annual Advocacy Conference or advocating from home by contacting…Continue
Added by Ryan Fischer on January 5, 2012 at 2:00pm — No Comments
Having sons with Duchenne forces us into advocating for services, equipment and optimal health care. In reality, whether we are getting services for our son at school, dealing with insurance companies and doctor’s in trying to get the best care, or meeting with staff and members of congress we are advocating. In 2000 when Parent Project Muscular Dystrophy first organized their advocacy efforts in Washington DC, my family felt it was important to meet with our members of congress. By the…Continue
Added by Christine Piacentino on January 4, 2012 at 6:39pm — No Comments
I wanted to share with you a few of my resolutions for 2012...mainly goals for PPMD and the Duchenne community, but also a couple of personal reflections. 2011 was an incredible year for Duchenne. We made great strides in research, care, advocacy, and in raising awareness. But there is still so much I want to tackle...we all want to tackle.
Read over my resolutions and then please take a moment to share some of your own. This time next year, we can all check back and see…Continue
Writing you a quick note - can't wait to see everyone in Orlando! I'll be attending the Pasta Dinner on Friday & running the 5k Saturday!
I can't express how greatful I am of the Parent Project MD communtiy. You've all changed my life! Looking forward to meeting new faces. If your family is interested in coming to one of my races VIP style contact me via firstname.lastname@example.org and chat with me while at Disney!
Added by Shea Holbrook on January 2, 2012 at 9:20pm — No Comments
We walked together quietly for sometime, our fingers entwined slightly. The moon glistened on the newly fallen dusting of snow. I looked up at the stars that brightly lit up the night sky. The last year had been very tough on us, especially Josiah, it made me feel stronger to have him with me now. Some how he always helped me find peace in my broken shaken world. His hand gently squeezed mine. I stopped and looked at him momentarily, I wanted to know why. Why, was there so much pain in this…Continue
Added by Rita Felling on January 2, 2012 at 3:42am — No Comments
This year, for the first time, we will have a Run For Our Sons team participating in Disney’s 5K race, which allows runners to push someone in a wheelchair or stroller. Sam’s mom, Kris a first time runner, told us that the whole family will be participating this year.
Added by Will Nolan on January 1, 2012 at 3:30pm — No Comments