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"My Journey on the PPMD Adult Advisory Committee"

Ever wished you could change the world – or at least your piece of it? Been looking for a way to engage a bit more? Have personal experience that you’d like to see be better reflected in national policy and program efforts?


Hear first-hand what it's like to serve on the PPMD Adult Advisory Committee (PAAC) from current members Colin Werth & Ben Dupree below.

If you are an adult member of our Duchenne/Becker community and would be willing to lend your time, talent, and vision to paving our pathway forward, please consider applying to serve on the 2018 PAAC!


Application deadline: Friday, November 17th

 

What Is the Role of the PPMD Adult Advisory Committee (PAAC)?


The PPMD Adult Advisory Committee (PAAC) serves to ensure that the voices of adults living with Duchenne & Becker muscular dystrophy are reflected in PPMD’s legislative, policy, and program activities. PAAC members serve in a formal advisory capacity for their respective term and maintain leadership over a PAAC initiative throughout that term; PAAC initiatives are determined by the PAAC membership and PPMD Executive Team.

 

What Is It Like Being Part of the PAAC?

Ben Dupree, age: 25, hometown: Dallas, Texas

"For me, serving on the PAAC has been one of the greatest sources of a sense purpose. It helped me become comfortable talking about DMD and helped give me the motivation to be a better advocate for myself. In the PAAC I saw that individuals with DMD/BMD could have a voice in forging a path ahead for us and future generations to realize our goals and dreams. Whether by working to improve accessibility, sharing personal experience, or even just proving that something can be done, all of us have a chance to create positive change. Please consider joining the PAAC if you're looking to share your voice and help to shape the future for individuals with DMD/BMD."

Colin Werth, age: 22, hometown: Farmville, Virginia 

"I decided to join the PAAC after PPMD's 2015 Annual Conference in Washington, D.C. PPMD's Annie Kennedy, along with the 2015 PAAC members and a few other adults with Duchenne, hosted a pre-conference meeting for teens and adults living with Duchenne. When listening to the other adults like me speak, I felt a strong connection and saw myself fitting right in up there with them. It truly felt like my calling and I am really glad I joined this amazing group. I have really enjoyed working with Annie and getting to know the other guys. Although we have only met a few times in person I feel like I have really bonded with everyone on a personal level.

Earlier this year, we worked hard to put together another teen and young adult pre-conference for this year’s PPMD Annual Conference in Chicago. Looking back on the plans we made I am really happy about the choices we made for the panels and group discussion. What really showed all our hard work had paid off was the record number of teen and young adults with DMD that came to the conference. I always love going to PPMD conferences and this year’s was a real highlight for me too. I also helped with planning for last year’s conference as well, but was unable to attend because of a bone fracture. From what I heard, the 2016 Conference was a success as well.

In addition to helping with conference planning, I’ve also recently started working with the DuchenneConnect registry work group to help with guidance for making the website more user friendly. I figured with my background in web design my advice would be a great asset. All of us on the workgroup have come up with great ideas and I’m looking forward to seeing our final plan of action. I also have just been a resource and role model to parents and younger kids and teens living with Duchenne. I love connecting with families from all over the country and world, so that has been a real highlight of being on the PAAC for me.

Looking forward, I am excited to see how the PAAC continues to grow. I’m sure we’ll get some more great advice from new members who decide join this fall. It’s so good to know Parent Project is so supportive of the adults with Duchenne whose families they’ve supported since the beginning. I can’t say how truly thankful I am to be on this amazing “journey” with Annie, Pat and everyone at PPMD as well as the entire Duchenne community. We are closer than ever towards ending Duchenne!"

 


PAAC Member Requirements:


To be eligible to serve on the PAAC, members must be age 18 or older at the time of application and diagnosed with either Duchenne or Becker muscular dystrophy. All PAAC members are required to participate in bi-monthly Committee conference calls or webinars. In-person meetings are occasionally held in conjunction with PPMD’s Annual Advocacy Conference in Washington, DC and PPMD’s Annual Connect Conference each June; meeting attendance by PAAC members is strongly encouraged but not required for membership.

To Apply for PAAC Membership Consideration:


Please submit a brief statement of interest, along with a brief biography, and resume to Annie Kennedy, PPMD SVP – Legislation & Public Policy. Your Statement of Interest should include information about what contributions you feel you could make to the PAAC and what (if any) leadership and committee experience you have had in the past. Please note that inexperience will not disqualify your application.

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