Featured Blog Posts – August 2012 Archive (8)

Interview with Chris Garabedian, President and CEO of Sarepta Therapeutics

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…


Added by Sharon Hesterlee on August 31, 2012 at 10:30am — 2 Comments

Increasing stem cell survival in Duchenne therapy

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.


Although we’ve…


Added by Sharon Hesterlee on August 29, 2012 at 2:00pm — 6 Comments

Scott’s 46th Birthday

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…


Added by Pat Furlong on August 15, 2012 at 8:00am — No Comments

Summer vacations

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,…


Added by Brian Denger on August 14, 2012 at 9:00pm — No Comments

Coach to Cure MD: Text, Talk, Tailgate

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…


Added by Danielle Garrigan on August 9, 2012 at 8:00pm — No Comments

Standardizing Duchenne care


The clear message received by all at the end of the Transforming Duchenne Care meeting, held just prior to the PPMD Connect Conference, was that parents, providers and industry felt a need for clear, consistent standards of care for patients with Duchenne…


Added by Kathi Kinnett on August 8, 2012 at 9:30am — No Comments

Celebrating Our Olympic Hero

If you asked me if I could swim, I might say ‘more or less’. Translated, that means that somewhere long ago I took some lessons, that are now lost to memory and in some strange way in my ‘muscle memory’ and adapted for the few times I have access to a pool. For some of us, the ‘more or less’ approach is what we do. Paddle around the shallow end, jump or dive…


Added by Pat Furlong on August 1, 2012 at 9:30am — No Comments

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