Featured Blog Posts – October 2011 Archive (9)

Family trip to the Pumpkin Patch

Our family trip to the pumpkin patch.  We had a great time laughing and just spending time together.  Over the last 3 years life has thrown up a few curve balls, but I am so happy to have my amazing family to love.  (Left to right, Wyatt 3 1/2, Travis 12, Carter 8 months, Leigha 17, Brady 6, Anthony…

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Added by Wyatt's Mommy, Melissa on October 27, 2011 at 8:51pm — 1 Comment

Seasons

Fall is my favorite season. It is a wonderful time of year from the time summer ends with warm sunny afternoons, cool crisp evenings and long shadows to the mid season with brilliant foliage, the smell of apples and oak leaves that amuse the senses. Even late fall is pleasant when most things turn from crimson and gold to mainly brown, the trees struggle to hang on to a few remaining brown leaves and the temperatures barely stay above freezing. Fall is a comforting season when people turn in…

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Added by Brian Denger on October 26, 2011 at 9:13pm — 1 Comment


Staff
World Muscle Society Congress & ACE-031 news

The Duchenne community has been eagerly awaiting news about a Phase 2 Randomized, Placebo-Controlled, Multiple-Ascending-Dose Study of ACE-031 in ambulant, steroid-treated boys with Duchenne (A031-03). We were all disappointed to hear the study was terminated and hoping to understand what were the results of the study in terms of safety and pharmacologic effects and what expectations we might have with regard to next steps for ACE-031. We needed a therapeutic dose of…

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Added by Pat Furlong on October 25, 2011 at 12:00pm — 18 Comments


Staff
Genetic Therapy Science News

In 1986, Louis Kunkel is recognized for discovering the dystrophin gene...

 

He was not the only individual focused on finding the gene responsible for Duchenne. There were several groups of investigators in Europe, Canada, and the US racing to find this, the first gene to be…

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Added by Pat Furlong on October 20, 2011 at 11:30am — No Comments

a little angel

Laughter echoed from down the hallway. I paused folding the laundry momentarily to listen. It was MEA week and my two younger sons were off from school for the next few days. We had happily agreed to entertain my nine year old niece Kayla and her friend Meaghan during this time. Just the week before my boys had mentioned they missed playing with their cousin Kayla and wondered when we could have her stay over again. It is wonderful sometimes how things can just magically fall into place.…

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Added by Rita Felling on October 20, 2011 at 12:00am — 1 Comment

a week away

My son Zach let know immediately upon the return from my "moms week away" how happy he was to have me back at home and resume my role as mother. He had graciously accepted the responsibility of caring for his two disabled younger brothers, while I spent a week in Vegas with my two sisters, relaxing and enjoying some much needed time off. As he wrapped his arms around me to welcome me home he whispered that everything had…
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Added by Rita Felling on October 17, 2011 at 2:38am — 1 Comment


Staff
Rate your Duchenne/Becker care through the Clinic Survey

The MD-CARE Act was signed into law in 2001 and reauthorized in 2008. What’s that got to do with a clinic survey you might ask? The MD-CARE Act was a pivotal moment. In a certain way, it was…

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Added by Pat Furlong on October 13, 2011 at 10:32am — 3 Comments

Learning to sail his ship

Ever since Jonathan was diagnosed with Duchenne, I’ve often wondered and reflected on what his life would be like.  I’m always surprised and impressed with his can do attitude.

As we looked at colleges and careers, Jon made the decision to live at home on his own.   I was worried that he was making his choices based…

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Added by Christine Piacentino on October 9, 2011 at 9:19am — 4 Comments


Staff
An Amazing September Starts a Fall of Promise

Dear Friends,



As we say goodbye to September and hello to autumn, I wanted to take a moment and thank you.



PPMD and the entire Duchenne community are busier than ever. There is so much to do, to push forward, to get done, in our daily lives and in the care of our sons. Every now and then, though, it is important to take a minute to exhale and realize what you’ve done, what’s been accomplished, and what is happening around you.



I…

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Added by Pat Furlong on October 5, 2011 at 9:00pm — No Comments

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