Featured Blog Posts – January 2010 Archive (6)

Watching From Israel

Duchenne Israel held its first conference on Tuesday evening. Professor Yoram Nevo, the leading pediatric neurologist and CINRG director opened the meeting with a discussion about his efforts to combine Losartin and Copaxone as a potential substitute for steroids. He has data on each compound and will now test the combination in the mdx mouse. 60+ family members, doctors, researchers, and healthcare professionals attended the meeting. The room was filled – over 60 family members, doctors,… Continue

Added by Pat Furlong on January 22, 2010 at 10:22am — 2 Comments

The Marathons of Life

On January 9, I ran the Disney ½ marathon in Orlando. Well, ‘run’ may be a loose term, I walked, but I walked fast enough to complete the race in the required time, crossing the finish line, greeted by a wonderful volunteer holding the coveted Donald Duck medal. It was my third marathon.

I started walk/running in 1984, just after the word Duchenne entered my vocabulary. I was running for something, my own private marathon. I walked for my sons. I wanted to take steps for them, wanted… Continue

Added by Pat Furlong on January 19, 2010 at 10:58am — 1 Comment

Staying the Course

2010, January

As I spend time on the community site and Facebook, I feel a little jittery. Expectations are high. Everyone is counting days and everyone seems to have a different calendar, a different opinion, and a different bit of information. Some have contacted a clinical center, asking how to get their son in a certain trial, wishing to be first in line. Others have gotten less than expert opinions on genetic testing and the potential ability to participate in an upcoming… Continue

Added by Pat Furlong on January 14, 2010 at 3:30pm — 8 Comments

Kennedy Krieger Institute – December 17, 2009

It is probably safe to say, you have heard of Kathryn Wagner, M.D., PhD. She is one of us, one of those doctors who wraps a protective arm around her patients and families, always thinking about what could or should be done to protect and preserve function and to ensure quality of life. You may know her from John Hopkins where she is an Associate Professor of Neurology. At Hopkins, she concentrated her energy on neuromuscular and neurogenetic diseases with a special emphasis on hereditary… Continue

Added by Pat Furlong on January 6, 2010 at 4:53pm — 14 Comments

Aligning the Stars

PPMD is growing. We have an amazing Board, an equally amazing staff (commonly referred to as the Cult), and a wonderful community. So what should be the logical next step? This has been our conversation for the last year. It is easy right? Add staff. But as you begin to think of who that person might be, you start to develop a wish list, naming all of the qualities/skills you are hoping to find in a person. And then there is Duchenne. How do you explain Duchenne to someone who has no… Continue

Added by Pat Furlong on January 5, 2010 at 10:22am — 6 Comments

Holly PA

What’s new at PPMD? Holly Peay (pronounced P-A). Well, not exactly new, but new in that Holly has joined the staff of PPMD! We first met Holly when working on DuchenneConnect, the patient self-report registry. She came highly recommended as a genetic counselor, an educator, and an all-around, really smart woman. Her task was to create educational materials for families and for providers – educational information about Duchenne, about… Continue

Added by Pat Furlong on January 4, 2010 at 5:39pm — 2 Comments

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