March 2014 Blog Posts (30)

what happens next?

Well it has been a hell of a week. I have talked to two of my sons physical therapists. They have both in formed me that his hips and legs pretty much lost all muscle. He is losing upper body too, he has lost his grip, his shoulders, his elbows. And he is losing his back and stomach. So now i am wondering what comes next. He already has heart problems so what do we do.  Im scared that it is going to fast for him because it just started speeding up like this any suggestions.

Added by danielle on March 14, 2014 at 8:56pm — No Comments

Action Alert- Ensuring Federal Agencies Working on Duchenne Receive Proper Funding

Though the MD-CARE Act remains our top priority, we need to ensure that agencies receive adequate funding and direction for the programs that are so critical to our community. One tool we use to ensure that funding and direction is our Congressional funding letter. It has made a tremendous impact on appropriations. 

To illustrate this point, let’s look at how our yearly funding letters have impacted the NIH’s…


Added by Ryan Fischer on March 14, 2014 at 9:30am — 4 Comments

We Must Understand Heart Health in Duchenne

I have had the great pleasure of representing Parent Project Muscular Dystrophy and the Duchenne community at the Muscular Dystrophy Coordinating Committee (MDCC).   Members of the MDCC are involved in muscular dystrophy research, including federal agencies and advocacy organizations.   Last August, I spoke at a MDCC meeting. The meeting was seven months after my son Matthew died from a cardiac arrhythmia.   His passing made me realize the management of cardiac health is complex and needs to…


Added by Brian Denger on March 11, 2014 at 6:00pm — No Comments

to many questions not enough answers

How is it our sons can seem like this doesnt bother them? But then one day you watch him and you see everything he cant do but you sit and think its like this every day and hes fine. But this day he cries. I watched my son at a birthday party today, the other kids were playing with water balloons and a pinata. He tried playing both with them he was to weak to hit any candy out of the pinata and then when one of the bigger kids busted it all the other kids got the candy and my son sat under a…


Added by danielle on March 8, 2014 at 11:05pm — 1 Comment

The Alternative

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 March 7, 2014 at 2:30pm — No Comments

In Support of Approvals

As a mother who lost two sons to this dreadful disease, I am driven to find every way possible to help bring new therapies to families, to end Duchenne. PPMD supports and agrees with all parents urging the agency to accept Sarepta’s submission for the approval of eteplirsen, as well as any other therapy that shows similar promise. The voices of patients and caregivers are critical to the process of drug development and we believe the message is being heard.

PPMD is…


Added by Pat Furlong on March 7, 2014 at 9:30am — No Comments

Contemporary Cardiac Issues in Duchenne Muscular Dystrophy

We all know that the heart is a muscle too! Most people and parents living with Duchenne feel that care for the heart, as defined by the Care Considerations, is not as current or as aggressive as they would like. In 2009, when the Care Considerations were published, cardiac care was very…


Added by Kathi Kinnett on March 5, 2014 at 1:30pm — No Comments

MD-CARE Act: Adding New Cosponsors

It's been just one week since the 2014 Advocacy Conference, and we have already upped the number of cosponsors for the MD-CARE Act! We are now at 85 in the House & 21 in the Senate. Please take a moment to reach out to our newest cosponsors listed below thank them.

This community is…


Added by Ryan Fischer on March 4, 2014 at 4:00pm — 1 Comment

Come on Canada

Dear DMD community, I would like to have Health Canada make its own decision, independent of the FDA, about Drisapersen and Eteplirsen and any upcoming duchenne drugs. We need all countries taking action on this, so let it be known that we want these drugs NOW. Please write to Health Canada, Rona Ambrose, our federal health minister, write to your provincial health ministers, ask your physicians to do it too, write or phone:

Genevieve Moore



Added by Andrea Cleary on March 3, 2014 at 11:30pm — 1 Comment

stair lifts help

Hi everyone so were in the process of renovating our home and we are not sure to go with the wheelchair ramp or a wheelchair lift for the outside of the home we live In new york and my concerns with a lift is the weather it is very unpredictable and not sure what to do.. any suggestions would be greatly appreciated

Added by jessica santini on March 2, 2014 at 6:46pm — 2 Comments

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