December 2013 Blog Posts (27)

My BRAVE Story: We are exhausted

Dears,  I am a father of fantastic young boy, 8th years old. As a child who are just entering his life he has many dreams and plans: who to be in a future, what to do in the future... However, the future may not be for him, at least this future he things about. He is DMD affected. He is already excluded from the activities that his friends do (e.g. futball, othe sports...). He feels worse than others. Decrease of his strength and increase of his awareness make him finding it as…


Added by PPMD on December 11, 2013 at 9:38am — No Comments

My BRAVE Story: Our grief and anguish are felt every single day

The news that my 3-year old grandson had Duchenne literally took my breath away.  For months, my daughter, son-in-law, and husband could barely function with this earth shattering diagnosis. 

Even today after 6years, our grief and anguish are felt every single day.  As we cling to our faith that an effective treatment will be found, a dark cloud overshadows every moment of our lives.  Imagine watching the most beautiful child in the world stand on the 3rd porch step, and…


Added by PPMD on December 11, 2013 at 9:35am — No Comments

Together We Can Make a Difference

Why the December FDA Policy Forum is important to every Duchenne family – from rare mutations to Exon 51

Guest post Lance Hester. Lance is a PPMD Board Member and lives in Gig Harbor, Washington, with his wife, Janelle, and their two boys, Brayden and Micah. Micah was diagnosed with Duchenne in 2005.…


Added by PPMD on December 9, 2013 at 1:00pm — No Comments

Important Updates on the Duchenne Policy Forum

Due to overwhelming interest in PPMD’s Duchenne Policy Forum on December 12 in Silver Springs, MD, registration is now closed. We are at capacity and unfortunately there will be no onsite registration due to space restrictions.

We are…


Added by Ryan Fischer on December 6, 2013 at 11:30am — No Comments

In Loving Gratitude

Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living …


Added by PPMD on December 6, 2013 at 8:00am — No Comments


We got a letter today from GOSH telling us that they are also testing for FSHD and Limb Girdle. That's a lot of tests... still so baffled here, and dying to know what we're up against. But also not wanting to know, because it might be bad news for Dash. It's hard to look at his sweet smiling face each day and listen to him laugh.. today his sister got travel sick and threw up in a packed lunch box that still contained a sandwich. Dash thought this was the funniest thing he'd ever seen -…


Added by Frankie Butler on December 4, 2013 at 4:00pm — No Comments

Move Duchenne research forward faster with one simple action

Dear Friends,

For our families, Duchenne research can’t move fast enough.

There is no lack of ideas or interest—7 public companies and more than 15 biotechs are focused on finding treatments for Duchenne. But promise is only one part of the story. We need to actually change the landscape and bring drugs to market faster.

You can help make it happen with one simple action:…


Added by Pat Furlong on December 4, 2013 at 11:00am — No Comments

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