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All Blog Posts Tagged 'PPMD Blog' (764)


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


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

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

Interview with Chris Garabedian, President and CEO of Sarepta Therapeutics

We are all acutely aware of the need for an effective treatment for Duchenne. Finding a way for children and young men affected by Duchenne to lead longer, healthier lives is at the heart of all of our efforts as families’ fight this devastating disease.

 

This week PPMD received an…

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Added by Sharon Hesterlee on August 31, 2012 at 10:30am — 2 Comments

Increasing stem cell survival in Duchenne therapy

One approach to improving muscle strength in Duchenne is to replace unhealthy muscle cells that lack dystrophin with donor stem cells that have normal levels of dystrophin. These cells might come from a relative unaffected by Duchenne or even a person with Duchenne’s own cell, after dystrophin is restored…

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Added by Sharon Hesterlee on August 29, 2012 at 2:00pm — 6 Comments


Staff
Scott’s 46th Birthday

First, my disclaimer. I’ve known Scott and the Sands family for more than 20 years. I met Scott’s father during my travels long ago, both of us looking for magic for our sons. I knew well the story of Scott’s family traveling to Florida when he was 23, the emergency tracheostomy,…

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Added by Pat Furlong on August 15, 2012 at 8:00am — No Comments

Summer vacations

Brian Denger is the father of two sons who are living with Duchenne. He is very involved with PPMD in the effort to educate and help families living with Duchenne.

Vacations and summer are synonymous for many families. When people think of vacations,…

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Added by Brian Denger on August 14, 2012 at 9:00pm — No Comments


Staff
August Note: Going for the Gold

As you read this month's newsletter, the 2012 Summer Olympics in London are coming to a close. The world’s best athletes are heading home with their medals or their hearts broken, but all of them taking with…

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Added by Pat Furlong on August 13, 2012 at 6:00am — 1 Comment


Staff
Senate and House Continue to Send Message Against CDC Consolidation

Thank you to everyone who reached out to their Senate and House members about stopping consolidation of vital Duchenne programs at the CDC! Members of both the…

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Added by Ryan Fischer on August 9, 2012 at 10:09pm — 2 Comments


Staff
Run For Our Sons – Newsletter/Updates



The past six months have been action-packed for Run For Our Sons, and we wanted to take a moment to share what's happened and what's ahead with the entire Parent Project Muscular Dystrophy community. A big thank you to each and every one of you who have gone the distance to end Duchenne, whether it was a full marathon or a 5K - you're helping us raise funds to support PPMD's…

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Added by Nicole Herring on August 9, 2012 at 8:46pm — No Comments


Staff
Coach to Cure MD: Text, Talk, Tailgate

Football season is one of my favorite times of year. It brings me back to watching my college football team, the James Madison University Dukes, who will always be near and true to my heart. Who doesn't like to tailgate and root on their teams?



On September 29,…

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Added by Danielle Garrigan on August 9, 2012 at 8:00pm — No Comments

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