May 2010 Blog Posts (16)

May 2010

We have been a very busy family over the last few months. School is winding down, and we are really looking forward to a relaxing summer.

We've spend the last 5 months or so getting ready for the Seattle Rock and Roll Marathon and 1/2 Marathon. We have 8 members of Team Wyatt to raise money for Run for Our Sons. We have about 3 weeks left to raise money and so far our total is just over $6300.

I can't wait to share pictures with all my PPMD friends when the race…


Added by Wyatt's Mommy, Melissa on May 29, 2010 at 5:02pm — No Comments

Ataluren Update

As many of you know, because you participated, PTC held an open conference call yesterday to update the community about ataluren and future plans. The discussion included analysis of data from the ataluren trial and a summary of regulatory challenges. Langdon Miller (Chief Medical Officer for the trial) described PTC’s plan for regulatory interactions relating to ataluren… Continue

Added by Pat Furlong on May 28, 2010 at 4:00pm — 19 Comments

On the level, opening up.....

Fed up of people telling me how to feel, how to be positive.

Sometimes I am, hiding my feelings under that thin veneer of a laid back

jokey positive person.

Other times I'm in a depth of darkness, lost and fighting my way out of


How do I really feel, I'm dying to be free of this wretched body,

I wanna do things, play guitars, properly hold someone close, make love to

someone special, go for quiet runs in the park, stand in a tranquil… Continue

Added by Ian Anthony Griffiths on May 26, 2010 at 8:24pm — 7 Comments



We (PPMD and Cure Duchenne) are working with FDA to organize a Webinar. The purpose of the webinar is education - about…


Added by Pat Furlong on May 25, 2010 at 7:56am — No Comments

Pepsi Refresh Contest

Hello All!

Just a reminder to VOTE for Jett Foundation in the Pepsi Refresh Contest! Jett Foundation would like to send proceeds from this contest to ALL the B/DMD specific organizations who help us win!

Jett Foundation would like to collaborate with these organizations and fund important research projects that will bring us closer to a treatment!

Please show us YOUR efforts to collaborate on this endeavor using…

Added by Christine McSherry on May 24, 2010 at 4:28pm — 1 Comment

Today's news

A new clinical trial for the investigational compound GSK2402968 (formerly PRO051) was posted to today. This study, GSK protocol # DMD114118, will assess the pharmacokinetics, safety and tolerability of GSK2402968 after a single administration, at escalating dose levels, in non-ambulatory boys with DMD who have a dystrophin gene mutation amenable to an exon 51 skip.

The inclusion/exclusion criteria, study… Continue

Added by Pat Furlong on May 24, 2010 at 12:58pm — 6 Comments

From Happiness to Dispair

Well just as I expounded my happiness I had to ruin it.

Sadly I've had to split with Sarah. Too many painful problems and difficulties needed to be overcome and we both decided it wasn't going to work out.

I am doomed with relationships I reckon. DMD often gets in the way. No matter what we say or think it does physically stop us doing stuff. When all you want to do is hug someone you can't, how are you supposed to feel about such things?

I don't get… Continue

Added by Ian Anthony Griffiths on May 22, 2010 at 8:26pm — 3 Comments


Getting ready for the normal high school milestones in our house is always a creative endeavor. At the beginning of April Jon came home from school and said that he wanted to attend Prom. He asked if he could attend the prom without renting a tux. Our goal is to have Jon experience all the normal things kids his age get to experience. I said, yes we should get a tux. The month of April flew by. On…


Added by Christine Piacentino on May 19, 2010 at 11:30am — 3 Comments

Charity Events, Fun and Rewarding

On Saturday, May 15th, Mandy and I held our first ever charity event for our boys. After diagnosis about a year ago, the first charity we came in contact with was Since then, we've been in regular contact them, and were lucky enough to have the founder, John Davidson, come out and visit us last month. Once the initial shock wore off, we new we wanted to do something to help the cause, and decided a run/walk in coordination with… Continue

Added by Andrew Kerr on May 17, 2010 at 12:32pm — 1 Comment

My son is graduating from college!!

I am so excited!! My son is graduating from college in two weeks after 4 years. (better than me). He is graduating cum laude from our local universities Honors College.

I just never thought this day would ever come when he was diagnosed 17 years ago...

Added by Margaret Cohan on May 14, 2010 at 9:14pm — 12 Comments

I found my Happiness

I found my Happiness....And her name is Sarah.

Well in March something magnificant happened I met this wonderful amazing loving glorious lady on Facebook. We got to know each and now almost seven weeks later are getting on famously. We've met a few times in person and had amazing times and Awesome fun. Playing music and being close. Holding each other for precious moments.

I had thought before that I would die alone never being loved. After many tears and lonely nights and… Continue

Added by Ian Anthony Griffiths on May 13, 2010 at 3:38pm — 15 Comments


Sitting still is difficult for me. To say I prefer to stay busy is a bit of an understatement. Ask my wife Alice if she thinks I'm doing too many things. Between work, family, my involvement in DMD programs and running there isn't much free time left. When I do get a minute or two I'm thinking of my next task as rewording an e-mail or working out details for a project, otherwise if I sit too long idly I begin to doze off. Some Sundays as I sit in church with my family I catch myself dropping… Continue

Added by Brian Denger on May 12, 2010 at 4:44pm — 4 Comments


Friday, May 7, 2010

On occasion I have to admit time off from Mommy duty is like being handed time in a bottle. Rare and priceless, for some of us. As women we embrace date night, girls night out or even just time alone relaxing. Times we look forward to and deserve. Divorce has certainly given me some well earned free time. But every now and then a weekend or night where I have no plans occurs and I feel at a lost to the world. I wonder who am I with out my children or a date to remind me… Continue

Added by Rita Felling on May 8, 2010 at 12:36am — No Comments

Research Update from the Road: Trends in Biotech and more on Exon-skipping

May 7, 2010

I’ve been traveling pretty steadily for more than a week now—first out to Seattle to meet with AVI Biopharma at their headquarters, then to Chicago for the Biotechnology Industry y Organization meeting and finally to Ottawa for the “New Directions in Muscle Biology and Disease” meeting. I thought I would take this time to share with all of you what I’ve seen and heard.

First, it was good to put faces to names at AVI, the Seattle-based biotechnology company that… Continue

Added by Sharon Hesterlee on May 7, 2010 at 9:34am — 19 Comments

Partial Wind in My Sails

The wind in my sails may be coming back.

Two things have occurred that provide me with some hope that Ataluren may still be viable.

One was the…


Added by Christine Piacentino on May 7, 2010 at 9:10am — No Comments

Cardiac Issues


Added by MommaToo on May 1, 2010 at 12:30am — 2 Comments

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