All Blog Posts Tagged 'My Voice' (20)


Staff
My Voice: Ansel Lurio, 29 years old

In a few weeks, PPMD will be hosting a Policy Forum on clinical trials of experiment agents This is a landmark meeting that will include participation from the FDA. It will also include Ansel Lurio, our Featured Voice for November. Ansel is a 29-year-old with Duchenne and has…

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Added by Will Nolan on November 15, 2013 at 10:00am — No Comments


Staff
My Voice: Jake Pritchard, 9 years old

When a family hosts a fundraising event for Duchenne, we are thrilled and extremely grateful. When a family hosts the same event six years in a row, we are overwhelmed! This year the Pritchard family, along with their friends – Meghan and Jason Alpern – in Matthews, North Carolina will host the 6th…

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Added by Will Nolan on October 15, 2013 at 11:30am — No Comments


Staff
My Voice: Mitchell Peterson, 17 years old

Saturday, August 17 marks the 15th Annual Mitchell's Run Thru Rockford. And for 15 years, the Peterson family has been raising money and awareness for Duchenne. Mitchell Peterson, 17 years old, has been the inspiration behind this event that continues to grow in numbers and momentum. He refuses to be defined by Duchenne and as he begins his senior year of high school, is already planning for a career after college. The Peterson…

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Added by Will Nolan on August 15, 2013 at 12:29pm — No Comments


Staff
My Voice: John Owen Dumm, 9 years old

For six years now, the Dumm family in North Royalton, Ohio has been hosting JOA Picnic in the Park to raise money and awareness for Duchenne research. This is just one of the many things John Owen's Adventure, Inc. (JOA) does for our community. At the heart of JOA is 9-year-old John Owen Dumm who is a rising fourth grader with Duchenne and an active participant in his namesake event. In fact, John Owen and JOA have…

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Added by Will Nolan on July 16, 2013 at 3:03pm — No Comments


Staff
My Voice: Matt Scheivert, 17 years old

As you know, each month we feature someone in the community with Duchenne, that has done something really special to raise awareness and help us in our fight. This month, we are featuring 17-year-old Matt Scheivert, who doesn’t have Duchenne, but has already decided that he wants to continue to work in Duchenne research and advocacy. He plans to attend…

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Added by Will Nolan on April 17, 2013 at 2:22pm — No Comments


Staff
My Voice: Christopher Cameron, 11 years old

As we remind you to register for DuchenneConnect or update your information in…

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Added by Will Nolan on March 15, 2013 at 11:00am — No Comments


Staff
My Voice: Tayjus Surampudi, 17 years old

Over the last few years, we have seen something rather phenomenal happen... Our Annual Advocacy Conference use to be made up of parents and relatives of people with Duchenne. But every year, more and more people with Duchenne are joining us on Capitol Hill to tell their own story. Tayjus Surampudi, a seventeen year old from New Jersey, joined us with his parents in D.C. for…

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Added by Will Nolan on February 13, 2013 at 3:00pm — No Comments


Staff
My Voice: Anthony DeVergillo, 19 years old

When you meet Anthony DeVergillo in person, you can’t help but leave the conversation with a smile on your face. This almost 20-year-old is the definition of optimism. In fact, he has made spreading optimism his life’s work. From an early age, Anthony realized he had two choices with his Duchenne diagnosis – let it defeat him both physically and emotionally, or challenge it…

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Added by Will Nolan on January 16, 2013 at 1:00pm — No Comments


Staff
My Voice: Mohammed Haider, 23 years old

You recognize the face and the name from this year’s holiday campaign – college graduate, working on his Master’s degree, funny. But who is Mohammed “Mo” Haider? What’s his story? This month we introduce you to a great guy who has been part of this community…

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Added by Will Nolan on December 17, 2012 at 1:55pm — No Comments


Staff
My Voice: Michael Counterman, 20 years old

Michael Counterman is a 20-year-old at the University of Massachusetts in Boston. He has worked with PYD, an inclusion-based organization that helped him interact with other kids and raise awareness about Duchenne. Recently recognized for his ongoing contribution to the group, Michael is an inspiration to anyone who needs a little help finding their niche. He is a natural…

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Added by Will Nolan on November 15, 2012 at 11:30am — No Comments


Staff
My Voice: Ryan “Wheelz” Schmidt, 20 years old

Wheelz (a/k/a Ryan Schmidt) is a 20-year-old musician from Austin, Texas. He is an accomplished rapper, and with his family, hosts Ryan’s Day – one of the largest annual fundraising and awareness events for Duchenne in Austin, just held last week. The combination of his inspirational raps and Ryan’s Day remind people outside the community that we are in a fight to end…

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Added by Will Nolan on October 15, 2012 at 11:00am — 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
My Voice: Sean Quigg, 18 years old

Creativity, humor, edgy, important – these are just some of the words we can use to describe our Featured Voice for August, Sean Quigg and his Spaghetti Arms project. Sean wanted to raise awareness in a clever way that explained Duchenne, but was also cool. He also wanted an excuse to follow some of his favorite bands. Thus, Spaghetti Arms was born, whose mission is to…

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Added by Will Nolan on August 9, 2012 at 7:26pm — No Comments


Staff
My Voice: Jack and Nolan Willis, 10 years old

The clinical trial process is complicated and confusing. At this year’s Annual Connect Conference, PPMD wanted to shed light on what the experience was like for parents, clinicians, industry, and most importantly, patients. For our final panel, we assembled four…

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Added by Will Nolan on July 17, 2012 at 3:30pm — No Comments


Staff
My Voice: Elizabeth Heller, 25 years old

Elizabeth Heller, is a woman living a full life – student, activist, wife – and does it all, living with Duchenne. Considered to be a disorder that predominantly affects males, Elizabeth is an exception. Each year, Elizabeth joins PPMD in Washington to tell her story and…

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Added by Will Nolan on June 14, 2012 at 11:00pm — 2 Comments


Staff
My Voice: Cory Stalling, 11 years old

Cory Stalling is a fifth grader from Missoula, Montana. On July 8, a Run For Our Sons team will again pound the streets of Missoula on behalf of Cory as part of the Missoula Marathon. Cory and his family have been a big part of this community and now are taking another step to raise awareness, with a just…

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Added by Will Nolan on May 7, 2012 at 2:00pm — 1 Comment


Staff
My Voice: Francis Desmond, 13 years old

Sometimes the best way to tell your story is through pictures. We can feel what another feels by seeing things the way they see them. Francis Desmond is an 8th grader who likes to draw. He also has Duchenne muscular dystrophy. Francis and his dad, Steven Desmond, decided to turn their journey into art and have just their father/son illustrated project, A…

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Added by Will Nolan on April 5, 2012 at 2:00pm — No Comments


Staff
My Voice: Ricky Tsang, 30 years old

Our Featured Voice for March 2012 is 30-year-old, Canadian author, Ricky Tsang. If you are part of the Facebook world, you probably are friends with Ricky or have at least seen his name around. He is the author of the recently released, RIDICULOUS: The Mindful Nonsense of Ricky’s Brain, which has been…

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Added by Will Nolan on March 13, 2012 at 4:30pm — No Comments


Staff
My Voice: Jonathan Piacentino, 18 years old

Our Featured Voice for February 2012 is 18-year-old Jonathan Piacentino, a second semester freshman at Nazareth College. PPMD’s Advocacy Conference, held in the first quarter of each year, is the only officially organized gathering on Capitol Hill for the Duchenne…

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Added by Will Nolan on February 3, 2012 at 4:00pm — No Comments


Staff
My Voice: Sam Hersom, 10 years old

This year, for the first time, we will have a Run For Our Sons team participating in Disney’s 5K race, which allows runners to push someone in a wheelchair or stroller. Sam’s mom, Kris a first time runner, told us that the whole family will be participating this year.

“This whole experience of training for Disney and fundraising for PPMD has been very…

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Added by Will Nolan on January 1, 2012 at 3:30pm — No Comments

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