April 2010 Blog Posts (11)

Wish us Luck and Keep Us In Your Prayers...


Added by MommaToo on April 28, 2010 at 10:31pm — 3 Comments

Help Cure Muscular Dystrophy Phase II on World Community Grid Update

The HCMD Phase II project on World Community Grid in two weeks, will have run for one full year. Each day world-wide computers are now contributing an average of ~60 CPU years each and every day to this important project. To date volunteers, including my 58 person team, have contributed 16,071 years (160.071 centuries) worth of computation power to this project. This brings the project to roughly 22% completion, so there is still much to be done to… Continue

Added by Douglas Sanchez on April 28, 2010 at 1:47pm — No Comments


I pulled into a front space today and got out of the car. My son jumped out before me. An older man and lady were walking by and the man with a cane said you know you're in a handicap space and I replied yes, thanks, here's my permit and placed on my mirror. He said are you disabled and I said no I'm not and was silent. He started yelling at me and I pointed to my son as his back was to me. The wife started well he just suffers so much. I said whats the problem did you start to pull and and…


Added by Darcy Tumminello on April 24, 2010 at 8:53pm — 7 Comments

New news


I wanted to share this with everyone.

British Journal of Pharmacology, 2010) Co-administration of ibuprofen and nitric oxide is an effective experimental therapy for muscular dystrophy, with immediate applicability to humans

Clara Sciorati, Roberta Buono, Emanuele Azzoni, Silvana Casati,…


Added by Eileen DeLong on April 23, 2010 at 9:57am — 1 Comment

Immune Response to Exon Skipping

Responding to concern within the community regarding the potential for an immune response to exon skipping in the recent Quest Magazine article from the MDA, Annemieke Aartsma (Leiden University Medical Center) formulated the answer for families as follows:

First of all, the exon skipping trials are still ongoing, so unfortunately I cannot give you a definitive answer about a possible immune response to dystrophin after exon skipping. However, I… Continue

Added by Pat Furlong on April 20, 2010 at 1:20pm — 5 Comments

Week in Review: 4/11-4/15

I spent the better part of the week in Washington, DC with a full agenda. On Monday, I met with Peter Saltonstall (president of NORD). One of NORD’s major interests is the FDA. You are probably familiar with our advocacy agenda, this year concentrating on several areas relevant to clinical trials – one very specifically directed toward FDA. One of our requests focused on securing additional resources for the FDA, specifically more expertise and…


Added by Pat Furlong on April 19, 2010 at 11:58am — 6 Comments

PTC Therapeutics presentation at the American Academy of Neurology

Hi, does anyone know how to get the information about the PTC presenting at the American Academy of Neurology?

Added by Dalila Rodriguez on April 17, 2010 at 7:28am — 3 Comments

Live Report from the American Academy of Neurology

Sharon Hesterlee, Ph.D.

Senior Director Research and Advocacy

Parent Project Muscular Dystrophy…


Added by Sharon Hesterlee on April 15, 2010 at 5:30pm — 14 Comments

Field Day

Like so many of us here the one most dreaded day of elementary school for our boys is Field Day. Well, today was Field Day once again. I have 2 boys with DMD and 1 who is "normal". Why the quotation marks?..Because really what defines normal anymore anyway?

My oldest is 15 and way beyond Field Day. I remember his first Field Day..What will happen? I have a pit in my stomach as everyone else lathers sunscreen on their kids, gives them a water bottle and they hop on the bus off…


Added by Lisa Groeger on April 9, 2010 at 7:00pm — 3 Comments


During the Connect Conference last year, I was invited to speak in Albania. It is hard to say no to invitations during the Conference because the need is so clear and the impact of information so evident. So, I said yes…knowing it would be sometime in the future and maybe, depending on the circumstances, might not happen. In January, Mira contacted me reminding me of our conversation and the scheduled date, March 27. In January, the end of March seemed far away.

I met Mira some years… Continue

Added by Pat Furlong on April 6, 2010 at 1:04pm — 2 Comments



I read a book about man who wanted to go hike the Appalachian trail. Having ventured myself to hike sections of this enormous trail I was

very intrigued to read about his journey. He sent out post cards and

emails to former colleges and acquaintances in hopes to find someone

who may want to…

Added by Rita Felling on April 6, 2010 at 1:10am — No Comments

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