Will Nolan's Blog (32)

One Simple Action: Running for those who can’t

A family of 11…9 kids (the youngest with Duchenne), 2 parents and ALL of them participated in last weekend’s Walt Disney World Marathon. Bob McDonald, a PPMD Board Member, and each member of his family ran in at least one of the Disney races.  Even his youngest son Mark, with Duchenne, participated via wheelchair. Everyone in the family took a little time and effort (okay, maybe a lot!) and did something to help end Duchenne.…


Added by Will Nolan on January 16, 2014 at 10:51am — No Comments

Featured Voices of 2013

Each month for the last couple of years we have featured people with Duchenne who have made an impact on their community and our community in some significant way. Whether working with their parents to host a fundraising event, participating in a race, speaking in Washington, D.C., or sharing their story creatively to raise awareness, all of the amazing people we have…


Added by Will Nolan on December 16, 2013 at 2:30pm — No Comments

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…


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

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…


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

My Voice: TJ Clime, 9 years old

On September 28, 2013, families across the country will celebrate PPMD's Sixth Annual Coach To Cure MD. Coaches from nearly 600 universities and colleges around the country will wear a Coach To Cure MD patch to help raise awareness for Duchenne. Hundreds of high school coaches (and entire teams!) will also support this amazing event. TJ Clime and his family suited up and started supporting Coach To Cure MD weeks ago. This incredible third grader and his family have been on the field and TJ…


Added by Will Nolan on September 16, 2013 at 1:04pm — No Comments

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…


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

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…


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

My Voice: Ben Dupree, 20 years old

Coach To Cure, Sam's Day, North Texas FACES group, and now participating at PPMD’s Connect Conference at the end of June in Baltimore. These are just a few of the things 20-year-old Ben Dupree and his family participate in on behalf of the Duchenne…


Added by Will Nolan on June 14, 2013 at 12:39pm — No Comments

My Voice: Jack Knight, 12 years old

We are always grateful to anyone who hosts an event, runs a race, or even sells lemonade to raise money and awareness for the fight to end Duchenne. But when a family consistently hosts a community event, that grows year after year, well...we are overwhelmed! The Knight family from Colorado will celebrate the…


Added by Will Nolan on May 16, 2013 at 2:39pm — No Comments

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…


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

My Voice: Christopher Cameron, 11 years old

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


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

Rare Disease Day 2013

This year marks the sixth annual Rare Disease Day. This is an international event with various organizations planning awareness-raising activities. PPMD is excited to be honoring this important day by participating in a few different panels and workshops where Duchenne will be given a moment in the…


Added by Will Nolan on February 28, 2013 at 11:00am — No Comments

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…


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

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…


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

Your Go-to Duchenne News Resource

The Duchenne community is bigger than ever and Duchenne news is coming faster and more frequently than we could ever have hoped for. 2013 is already promising to be a big year in research, advocacy, care, and raising awareness. But…this can be overwhelming. With so much information coming your way, with a barrage of messages and posts through social media in your face, it’s hard to know what’s legit, what’s truly promising, and unfortunately, what just isn’t true.…


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

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…


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

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…


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

3 Easy Ways to Leverage Employee Giving & Make the Most Out of Your Donation

Workplace giving campaigns are convenient and effective ways to raise funds in support of ending Duchenne. And they are underway now!

Let your family, friends, coworkers, and everyone on your email list know that the annual United Way and CFC efforts are underway (look for the 'share' button at…


Added by Will Nolan on October 25, 2012 at 9:00am — No Comments

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…


Added by Will Nolan on October 15, 2012 at 11:00am — No Comments

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…


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

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