August 2009 Blog Posts (13)

New Here...Waiting for Diagnosis...

Wow what a interesting and mildly devastating past 2 weeks...Our gorgeous, rambunctous, sweet Trey man has our heart breaking... 2 weeks ago Trey decided to be Superman...he realized he can't fly and dislocated his elbow, after a trip to the ER and sedation to put his elbow back in 'spot', he was casted and sent home...

At our doctors appt. on Monday, to our surprise we had a new doctor. She is great...This happening often when you live a life such as ours ~ I'm a physical therapist… Continue

Added by Cori on August 31, 2009 at 2:00pm — 12 Comments

hi every one

hi does any one live in gainesville,tx

Added by leeann lane on August 30, 2009 at 10:41pm — No Comments

Please vote for Stuart Peltz, President and CEO of PTC Therapeutics.

Dear Friends,

Please vote for Stuart Peltz, Ph, President and CEO of PTC Therapeutics.

Stu has been has been nominated for R&D Magazine’s Scientist of the Year award. After reviewing candidates’ applications, the editors of R&D Magazine selected seven nominees. Now it is up to the public to choose the 2009 Scientist of the Year.

While PTC is known to our community for PTC124/Ataluren, it is important to understand that there is a great deal more… Continue

Added by Pat Furlong on August 28, 2009 at 4:55pm — 3 Comments

Stages our Boys Go Thru when Learning of DMD??

My son is 7.5 and I was told possibly an outliner. He runs as fast as the others kids at school, plays coach pitch and does not toe walk at this time. You cannot tell by apperance that he has DMD He was diagnosed two years ago. We are trying to tell him age appropriate about his condition. I have not used the word DMD , MD or Disease..(I hate those words and I'm sure most of you do)

He knows that he has to stretch to keep strong, he knows he takes muscle pills. He uses a convaid stroller… Continue

Added by Darcy Tumminello on August 25, 2009 at 7:00pm — 2 Comments

Who's steering this ship anyway?

By now you have probably checked out the Coach To Cure MD website, gotten a feel for all of the amazing things going on in the PPMD community to support Coach To Cure, and hopefully have gotten involved yourself. I wanted to take a moment, though, to recognize the people behind the scenes that are keeping the wheels of Coach To Cure MD turning.

CTC was the brain child of Brad Todd, brother of Rachel Poysky and uncle to Joel… Continue

Added by Pat Furlong on August 24, 2009 at 8:00am — 1 Comment

A Brave Young Man

My son, Jim Letteney, died on July 30th. He was only 21 and had cardiomyopathy due to the Duchenne MD. His heart lasted longer than anyone thought. I was with him. He passed away at home. Jim was very inspirational and brave. He never complained and was an optimistic young man. He did talk about feeling sad about having DMD and he would say that it wasn't fair that he had it. He asked me quite often if we had done everything that we could to help him. It wasn't fair that he or anyone else has… Continue

Added by Gretchen Letteney on August 22, 2009 at 7:12pm — 8 Comments

The World Muscle Society Meeting

If your summer was quiet and your Google alerts focused on fundraising rather than breaking news, hold on. Its almost September and while September is the third quarter of the year, in some ways it is a beginning, when life ramps up, school starts, Congress returns, and the world of muscle gathers in Geneva Switzerland for the World Muscle Society (WMS) meeting – September 9-12, 2009.

Thankfully Duchenne muscular dystrophy and/or muscle is the topic of many meetings throughout the… Continue

Added by Pat Furlong on August 19, 2009 at 11:24am — 4 Comments


My son Jacob is 9 years old (has DMD) and just stopped walking 3 weeks ago. My friends and I are trying to put together a Benefit for him. If anyone has any advice for me, please help? Thanks Jenna Shaw

Added by Jenna Shaw on August 18, 2009 at 5:32pm — 1 Comment

Just Diagnosed with DMD

Our son is four years old and has just been diagnosed with DMD. Should we be putting him on any special vitamins and/or special diet? He is currently not taking any medication yet.

Added by Angela Smith on August 17, 2009 at 1:57pm — 3 Comments

Friends ...

I have been part of a local mom's group for almost five years, and I have grown to count on my mama friends for advice and support through all of life's trials, and I've shared with them the joys of motherhood. When I told them the news that Max had Duchenne muscular dystrophy, I received an amazing outpouring of support, and I felt so fortunate to have these ladies in my life. However, as time has gone by, that support has waned, and my posts about various fund-raising endeavors, including… Continue

Added by Veronica E. on August 14, 2009 at 3:00pm — 6 Comments

Kicking off autumn with hope

So here we are, just six weeks away from the 2nd Annual Coach To Cure MD weekend on September 26. And here I am, again, completely awestruck by the way the Duchenne community has come together already to make this the year’s Coach To Cure even more successful than last year’s!

You are even more creative and more ambitious, determined to tackle and defeat Duchenne with this extraordinary partnership between PPMD and the American… Continue

Added by Pat Furlong on August 13, 2009 at 4:56pm — No Comments

Exon Skipping: Trial Update

Prosensa has completed their Phase II systemic delivery. AVI’s dose escalation trials are still in progress in the UK. Both companies are expected to discuss progress to date during the annual World Muscle Society meeting in Geneva, Switzerland, September 9-12, 2009. Both companies have targeted skipping exon 51 and trials were done to prove safety and to determine therapeutic dose. In both cases biopsies were performed before and following delivery of the exon 51 skipping… Continue

Added by Pat Furlong on August 10, 2009 at 3:43pm — 27 Comments

Life can change on a dime

“Life can change on a dime," my father used to say. I’m not sure about the dime, but I do know life changes with a single word. Duchenne changes life. Cancer does as well.

My husband, Tom is a physician. He gives advice and lives by his own advice, taking good care of his own health. In May, Tom was scheduled for a colonoscopy. We laughed about the prep, the amount of pills he had to take, the amount of water he had to drink and of course, the number of times he was “romancing” the… Continue

Added by Pat Furlong on August 10, 2009 at 10:18am — 31 Comments

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