Sunday, February 27, 2011

By Sara Newton



Shea Holbrook is a smart, bubbly girl you may have seen roaming campus through out the semester. Although she may come off as a typical UCF student, Shea is actually a successful race car driver. For Shea, racing isn't just an adrenaline rush, she races for a purpose. She is easily somebody each and every one of us can look up to for her dedication and passion. Her enthusiasm for racing and giving back is something that is truly… Continue

Jon finally became and Eagle Scout in February.  Achieving this honor took 12 years and 33 Merit Badges, the Rank of Brotherhood in the Order of The Arrow.  His Eagle Scout Project involved his love of nature and biology to build Bat Houses.  Jon’s service coordination for DDSO in NY State is thru Heritage Christain Home.  Heritage Christian Home supports independent living centers, a working farm and a therapy riding stable.  Jon built a demo bat house, and 6 other bat houses for one of the…

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Our families struggle with Duchenne will be aired nationwide on  the WGN February 27, this  Sunday at 6:00.   The series "Inside the Vault" is sponsored by GM and the episode that has a segment on Evan is called "The American Spirit". If you don't get that network, you can watch it on the internet after it airs.  Pass the word.  This is another opportunity to for awareness.

Two weeks ago, I was invited to present the story of Duchenne muscular dystrophy to Acceleron’s partner, Shire Pharmaceuticals. I walked in the door to find myself surrounded by the word “BRAVE.”  Brave is Shire’s approach, describes their commitment to rare disorders and their view of individuals with rare disorders.  “Brave” was on desks, next to photographs of patients, “Brave” was on walls, with descriptions of rare conditions.  “Brave” was the character of the people on Shire’s team.…

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This morning i gave my son prednisolone for the first time.

I told him the pills are good for his muscles and he swallowed them without problems. He didn't complain about the taste, but it must have been horrible. I kissed him afterwards and it tasted so bad, and I then gave him some chocolate. I know he can't get chocolate every time, but its the first time, so...

Since he was diagnosed last summer we have thought about giving him prednisone, and we have come to the conclusion…

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Struggling with emotions I can not hide.

I don't know if I can hold back the tears today.

Well I get to watch your son run and play.

I know I have two special boys

Always happy and smiling

 

All I feel is angry

What makes you think I have the heart for this?

Why have such confidence in me?

I know that I can handle this

I have the strengh I guess

But some days it is hard on me

To watch them always…

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The third panel for the One Voice Summit, moderated by Debra Lapin, focused specifically on the accomplishments and possible gaps in the MDCC Action Plan.  Members of industry and researchers made up the panel.  Jasbir Seehra and Chris Garabedian represented industry while Se-Jin Lee, and Eric Hoffman represented research.  Bob McDonald is a parent PPMD Board member who also was on this panel.  

 

The discussion began with Eric Hoffman’s review…

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The second panel for the One Voice Summit, moderated by David Zook, focused on Quality of Care and Quality of Life issues.  Kathryn Wagner, Mark Swanson, Katie Bushby, and Craig McDonald were panelist joined by a committee with Jerry Mendel, Katherine Mathews and Jen Garofalo.  

 

The panel took turns addressing aspects of the MDCC Action Plan addressing programs such as the MD STARnet, comparing and contrasting the Plan to efforts undertaken…

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Pat Furlong opened the One Voice Summit for Duchenne Muscular Dystrophy welcoming attendees.  She provided background of the MD CARE Act and the accomplishments over the past ten years including the Muscular Dystrophy Coordinating Committee’s Action Plan for muscular dystrophy.  Pat spoke about those who helped initiate Parent Project Muscular Dystrophy’s entry into the advocacy including meetings and advice provided related to Senators Arlen Spector and Roger Wicker, Joel Wood…

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