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September 2012 Blog Posts (20)

Parent Project Muscular Dystrophy awards $50,000 to Dr. Toshifumi Yokota for multi-exon skipping project

We are so happy to support the work of Dr. Toshifumi Yokota at the University of Alberta, in Canada. Exon skipping looks…

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Added by Sharon Hesterlee on September 27, 2012 at 2:30pm — No Comments


Staff
Implementing PDUFA

With Congress decamping from Washington and not expected to return until after the November election, we thought we'd revisit one of the few bright spots of bipartisanship this Congress – the enactment of the latest FDA user fee law (PDUFA), known as the FDA Safety and Innovation Act or FDASIA.…

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Added by Ryan Fischer on September 26, 2012 at 10:00am — No Comments


Staff
Calling All Mothers - We Need Your Input!

Parent Project Muscular Dystrophy’s Women’s project is still in need of moms to participate in the Mothers’ Survey. This survey collects information from mothers of children with Duchenne and Becker, including your needs, your strengths, and your wellbeing. The results from this survey will help us develop new…

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Added by PPMD on September 25, 2012 at 8:50am — 1 Comment


Staff
Notre Dame

Sure, I’ve been there, several times, but it has been a long time, more time than I realized. We actually had no plans to visit, but it seemed worth doing, having just spent the weekend in Dowagiac, Michigan, remembering summers long ago. It was an off-hand idea: my daughters Jenny and Michelle were flying back to New York, from South Bend…

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Added by Pat Furlong on September 19, 2012 at 4:00pm — No Comments


Staff
Why we joined the team: The Dumm Family

With the 5th annual Coach To Cure MD right around the corner on September 29, 2012, we wanted to tell you why you should make this the year you get in the game and show your support for one of the biggest national awareness campaigns in the Duchenne community. And we wanted you to hear it from families that have participated since the beginning... Here's why the Dumm Family joined the team!

 …

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Added by Danielle Garrigan on September 17, 2012 at 2:30pm — No Comments


Staff
September note: Back to School

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Fall is the start of a new year for so many of us, in so many different ways. The kids are…

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Added by Pat Furlong on September 13, 2012 at 2:00pm — No Comments


Staff
My Voice: Connor Vassigh, 6 ½ years old

Connor Vassigh is 6 ½ years old and his family have been among our most active participants in Coach To Cure MD over the last few years. Connor hosts a “Muscle Party,” inviting friends and family to have fun, party together, and enjoy a Saturday of football. He is a first grader who…

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Added by Will Nolan on September 13, 2012 at 1:30pm — No Comments


Staff
Medical Alert Bracelets for Duchenne

For several years now, there has been the question of, “Where is the best place to get medical bracelets” and “what should they say?”  Finally, I think we have an answer.

 

“Lauren’s Hope” started out as “You Name It,” and began as a fun little business making personalized gifts for women and children. They were approached by Lauren’s Hope for A Cure to…

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Added by Kathi Kinnett on September 13, 2012 at 1:30pm — 11 Comments


Staff
Falling into Fall (Two Moms, Co-Blogging)

The end of summer and the arrival of autumn brings up a mix of emotions in both parents and their children. Back to school is exciting, a new start. But it also means the end of summer and the beginning of the flurry of activity – schedules, calendars, multitasking. This month, Colorado…

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Added by Pat Furlong on September 13, 2012 at 1:21pm — No Comments

Early diagnosis makes a difference

Parents of children with Duchenne and Becker muscular dystrophy often experience a diagnostic odyssey that is too long and too emotionally difficult. Parents who have shared the story of their diagnoses told us:

“My son’s pediatrician blew off my concerns and told me some children just develop slower…

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Added by Holly Peay on September 13, 2012 at 1:12pm — No Comments


Staff
Announcing PPMD's Cardiac Webinar Series

Cardiac care and cardiomyopathy remain major areas of interest and concern for all people with Duchenne. While advances in respiratory care have improved respiratory outcomes, dilated cardiomyopathy and…

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Added by Kathi Kinnett on September 13, 2012 at 12:00pm — No Comments


Staff
Why we joined the team: The Cook Family

With the 5th annual Coach To Cure MD right around the corner on September 29, 2012, we wanted to tell you why you should make this the year you get in the game and show your support for one of the biggest national awareness campaigns in the Duchenne community. And we wanted you to hear it from families that have participated since the beginning... Here's why the Cook Family joined the team!

 …

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Added by Danielle Garrigan on September 13, 2012 at 8:48am — No Comments

Webinar Replay: Back to School

Back to school is sometimes more difficult for parents than for their children. This is especially true when their children have developmental or other disabilities that affect their ability to participate in the general curriculum. These children may require specialized supports and services to be successful.…

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Added by Brian Denger on September 12, 2012 at 12:30pm — No Comments

Assistant for son at school

Hello,

My son is in the 7th grade. I have been trying to get him an assistant in the event that he cannot move anymore. However, I have been unsuccessful. The special day class teacher is adamant that she is going to make my son independent. The truth is my son is independent. He likes to do things himself if he can. My son is the the GATE classes. He will soon need an assistant to help him with the simplest thing that need physical strength such as writing or math work. He also has…

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Added by Tang Thao on September 10, 2012 at 11:37pm — 1 Comment


Staff
Why we joined the team: The Poysky Family

With the 5th annual Coach To Cure MD right around the corner on September 29, 2012, we wanted to tell you why you should make this the year you get in the game and show your support for one of the biggest national awareness campaigns in the Duchenne community. And we wanted you to hear it from families that have participated since the beginning... First up is the Poysky Family!

 …

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Added by Danielle Garrigan on September 10, 2012 at 10:30am — No Comments

How to make the FDA move forward?

Regarding the recent articles about Jenny McNary's two sons:  Sarepta's Chris Garabedian says:

Parents and patients will be crucial to making that case to the FDA, he says: 'Here are parents who are willing to sign waivers that say, 'I don't care that this drug hasn't been tested fully ... because I know the alternative."



How can we in the PPMD community most effectively make this case?  Because of the publicity McNary has received, the public seems to understand the importance…

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Added by Claire Diemler on September 10, 2012 at 12:17am — No Comments

Getting moving again

PPMD Note: Mary Connolly recently joined PPMD as Vice President of Development. She comes to us from Episcopal Social Services, Gilda’s Club, and the United Way.



Last month I had the pleasure of assisting at two very inspirational events. On August 4, I was a race official…

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Added by Mary G. Connolly on September 9, 2012 at 8:30am — No Comments


Staff
The flu vaccine and Duchenne: What you need to know

Yes, summer is winding down, and the welcoming of fall brings many things – cooler weather, wonderful fall colors, the beginning of school and, unfortunately, the start of flu season. Every year, thousands of people get the flu. While it can be an inconvenience for some, the flu has resulted in thousands of deaths.…

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Added by Kathi Kinnett on September 6, 2012 at 9:30am — No Comments


Staff
Duchenne Advocate Shea Holbrook Finishes 4th in Touring Car Championship

Congratulations to racecar driver & Duchenne advocate Shea Holbrook for finishing 4th in the Pirelli World Challenge Championship!



Shea is one of this community's biggest advocates and we are so grateful that she continues to use her rising star in the world of…

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Added by PPMD on September 5, 2012 at 11:00am — No Comments

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