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 15)
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…Continue
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…Continue
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 identified. Dystrophin - thought to be the holy grail, the key that would soon unlock…Continue
Added by Pat Furlong on October 20, 2011 at 11:30am — No Comments
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.…Continue
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…Continue
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 on what his Dad and I thought. When we discussed living away…Continue
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.
Added by Pat Furlong on October 5, 2011 at 9:00pm — No Comments