I decided to join the PAAC after Parent Project’s 2015 Annual Connect conference in Washington, D.C. Annie, 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 Connect 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!