June 2010 Blog Posts (11)

Run for Our Sons Seattle

Run for Our Sons Seattle was a huge success. We met so many people along the way who wanted to know what Duchenne was. And everyone was so supportive. All the Wyatt Warriors finished. Our oldest member, Wyatt's grandpa (59), completed the full marathon in 3 hours 32 minutes which was 6th for his age group. That time qualified him for the Boston Marathon.

Added by Wyatt's Mommy, Melissa on June 28, 2010 at 8:45pm — 2 Comments

Exon 51 Skipping Study at Nationwide Children's Hospital in Columbus, OH

A double-blind, escalating dose, randomized, placebo-controlled study to assess the pharmacokinetics, safety and tolerability of single subcutaneous injections of GSK2402968 in non-ambulant subjects with Duchenne muscular dystrophy…


Added by Xiomara Rosales on June 22, 2010 at 11:39am — 1 Comment

I'll tell you what strength is....

For any boys or indeed girls with DMD what to do if some bully or ignorant person says you're 'weak',

You can say I'll tell you what strength is,

Strength is seeing your muscles waste away but still smiling!

Strength is missing out on things everyone else takes for granted but saying hey, whatever!

Strength is out thinking small minded people and coming up with a new way to do something!

Strength is seeing your wheelchair as an extension of your… Continue

Added by Ian Anthony Griffiths on June 21, 2010 at 5:39pm — 9 Comments

Dental Visit

My grandson is having frequent falls and as a result has chipped a front tooth, and now almost knocked out the other tooth! As a result, we need to take him to the Dentist. I just need to know if there is anything that I should be aware of, eg, can he have local anaesthetic?( we are aware of the risk of malignant hyperthermia during general anaesthetic.) Any advice most welcome please!

Added by Lesley Henderson on June 21, 2010 at 7:12am — 4 Comments

Sunday nights

Happens every time. Mom gets on the phone. Some light goes on and your children have a question or problem that needs immediate attention. "Let me call you back."

Same with acute illness. It’s Sunday evening and you wrap up the weekend. And suddenly, your little one complains. Sometimes it is a stomach ache, easily explained by a weekend of activity and a little too much of something. Other times, it is more serious, something you cannot put your finger on, but you have the sense that… Continue

Added by Pat Furlong on June 16, 2010 at 2:05pm — 1 Comment

Reversing the question – parents helping children; children helping parents. Is there a middle?

I just returned from a meeting in Europe and one of the best things about these meetings is hearing stories of families, listening to experiences, and learning about those special times when a child’s insight makes us stop in our tracks. It is not about criticism or what is wrong, right, or in between. It is just about those times when we find our hearts’ making a recording that we will remember all the days of our life.

One mom talked about all the things she was doing for her son.… Continue

Added by Pat Furlong on June 15, 2010 at 10:32am — 6 Comments

Thoughts lately

Lately I keep getting dreams or visions in my mind about holding my own child. Just like any other guy I think about having my own family. I dream of looking into the eyes of a little baby boy who is resting in my arms looking so innocent and looking like me (poor kid lol). Then my mind brings me down to Earth.

I realize I would need a female partner to make that happen. I want to get married before we'd make a family of our own. The problem is that I'm worried it will never happen. I… Continue

Added by Ian Anthony Griffiths on June 14, 2010 at 7:58pm — 1 Comment

Utilizing my professional racing career to help your sons & my cousin with DMD

My name is Shea Holbrook, 20 of Groveland, FL and on July 3rd the Dick Ide Honda Civic Si, with me behind the wheel, will take the grid at The Grand Prix of Watkins Glen with World Challenge alongside the Indy Racing League.

It is our goal to raise $10,000.00 by July 3rd in a benefit for Parent Project Muscular Dystrophy and we are asking you to PLEASE help us promote to raise awareness and funds.

Supporting the fight against Muscular Dystrophy was an easy choice…


Added by Shea Holbrook on June 14, 2010 at 2:00pm — 2 Comments

Washington Week in Review

Did I miss Spring? I spent the last week of May in Washington, DC. I had meetings on Monday and Tuesday centered around regulatory issues (FDA and OOPD), compounds, small clinical trials, webinars, and workshops in the planning stages and tossing around some ideas about how to design new models for trials, or how we might encourage companies to think a bit outside the box. Discussions like this are like taking a breath of fresh air into your lungs. I find them invigorating, hopeful, and… Continue

Added by Pat Furlong on June 10, 2010 at 12:14pm — 2 Comments

Sail Winds (Part 3)

In the weeks leading up to the conference call with PTC on May 27th all I kept hearing in my head was the chorus from a song from the musical Jesus Christ Superstar – What's the buzz?

Tell me what's a-happening?…


Added by Christine Piacentino on June 9, 2010 at 9:30am — 2 Comments


Wyatt is my pride enjoy! I am honored to be his MOMMY!

Added by Wyatt's Mommy, Melissa on June 2, 2010 at 11:36pm — 2 Comments

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