With the 5th annual Coach To Cure MD right around the corner on September 29, 2012, we wanted to tell you why you should make this the year you get in the game and show your support for one of the biggest national awareness campaigns in the Duchenne community. And we wanted you to hear it from families that have participated since the beginning... Here's why the Cook Family joined the team!
Added by Danielle Garrigan on September 13, 2012 at 8:48am — No Comments
Back to school is sometimes more difficult for parents than for their children. This is especially true when their children have developmental or other disabilities that affect their ability to participate in the general curriculum. These children may require specialized supports and services to be successful. Navigating and working with a team of educators and other…Continue
Added by Brian Denger on September 12, 2012 at 12:30pm — No Comments
With the 5th annual Coach To Cure MD right around the corner on September 29, 2012, we wanted to tell you why you should make this the year you get in the game and show your support for one of the biggest national awareness campaigns in the Duchenne community. And we wanted you to hear it from families that have participated since the beginning... First up is the Poysky Family!
Added by Danielle Garrigan on September 10, 2012 at 10:30am — No Comments
Last month I had the pleasure of assisting at two very inspirational events. On August 4, I was a race official for the 17th Annual River to Sea Relay (a 92-mile…Continue
Added by Mary G. Connolly on September 9, 2012 at 8:30am — No Comments
Yes, summer is winding down, and the welcoming of fall brings many things – cooler weather, wonderful fall colors, the beginning of school and, unfortunately, the start of flu season. Every year, thousands of people get the flu. While it can be an inconvenience for some, the flu has resulted in thousands of deaths.…Continue
Added by Kathi Kinnett on September 6, 2012 at 9:30am — No Comments
Shea is one of this community's biggest advocates and we are so grateful that she continues to use her rising star in the world of racing to bring awareness to Duchenne.
“I know the…
Added by PPMD on September 5, 2012 at 11:00am — No Comments
We are all acutely aware of the need for an effective treatment for Duchenne. Finding a way for children and young men affected by Duchenne to lead longer, healthier lives is at the heart of all of our efforts as families’ fight this devastating disease.
This week PPMD received an…Continue
One approach to improving muscle strength in Duchenne is to replace unhealthy muscle cells that lack dystrophin with donor stem cells that have normal levels of dystrophin. These cells might come from a relative unaffected by Duchenne or even a person with Duchenne’s own cell, after dystrophin is restored though a technique like gene therapy.
First, my disclaimer. I’ve known Scott and the Sands family for more than 20 years. I met Scott’s father during my travels long ago, both of us looking for magic for our sons. I knew well the story of Scott’s family traveling to Florida when he was 23, the emergency tracheostomy, at that time thought to be the best method for clearing secretions and battling…Continue
Added by Pat Furlong on August 15, 2012 at 8:00am — No Comments
Brian Denger is the father of two sons who are living with Duchenne. He is very involved with PPMD in the effort to educate and help families living with Duchenne.
Vacations and summer are synonymous for many families. When people think of vacations, what often comes to mind is travel to a tourist destination,…Continue
Added by Brian Denger on August 14, 2012 at 9:00pm — No Comments
As you read this month's newsletter, the 2012 Summer Olympics in London are coming to a close. The world’s best athletes are heading home with their medals or their hearts broken, but all of them taking with them memories that will last a lifetime. For this…Continue
Thank you to everyone who reached out to their Senate and House members about stopping consolidation of vital Duchenne programs at the CDC! Members of both the…Continue
In a letter to Senators Brown and Wicker (PDF), PPMD officially endorsed the National Pediatric…Continue
Added by Ryan Fischer on August 9, 2012 at 9:46pm — No Comments
The past six months have been action-packed for Run For Our Sons, and we wanted to take a moment to share what's happened and what's ahead with the entire Parent Project Muscular Dystrophy community. A big thank you to each and every one of you who have gone the distance to end Duchenne, whether it was a full marathon or a 5K - you're helping us raise funds to support PPMD's…
Added by Nicole Herring on August 9, 2012 at 8:46pm — No Comments
Football season is one of my favorite times of year. It brings me back to watching my college football team, the James Madison University Dukes, who will always be near and true to my heart. Who doesn't like to tailgate and root on their teams?
On September 29, 2012, coaches from your favorite university will be wearing…Continue
Added by Danielle Garrigan on August 9, 2012 at 8:00pm — No Comments
Creativity, humor, edgy, important – these are just some of the words we can use to describe our Featured Voice for August, Sean Quigg and his Spaghetti Arms project. Sean wanted to raise awareness in a clever way that explained Duchenne, but was also cool. He also wanted an excuse to follow some of his favorite bands. Thus, Spaghetti Arms was born, whose mission is to…Continue
Added by Will Nolan on August 9, 2012 at 7:26pm — No Comments
Over the past few years I have talked to a lot of parents, individuals with Duchenne, and clinicians about clinical trials. This probably won’t be a surprise to you: I often hear how desperation and a feeling of running out of time affect how people think and feel about clinical trials.
Many bioethicists are worried about…Continue
Added by Holly Peay on August 9, 2012 at 11:47am — No Comments
Parents agonize over clinical trials, balancing the pros and cons and above all else, wanting to do what is best for not just the physical health of their child, but the emotional health as well. In this month’s co-blog, Colorado FACES coordinator and parent Ivy Scherbarth and…Continue
Added by Pat Furlong on August 9, 2012 at 11:00am — No Comments
Rick Guidotti has a lot of energy - a lot of experience and expertise, but the first thing you notice about him is, he has a LOT of energy. I first heard him speak at Cincinnati Children's Hosptial Medical Center at pediatric grand rounds. He was in Cincinnati to promote his photography installation (“Positive Exposure”) at the Cincinnati Museum Center. He…Continue
Added by Kathi Kinnett on August 9, 2012 at 9:00am — No Comments
As Sarepta (formely AVI) announces promising results from its phase II interim data and GSK follows up its promising phase…Continue