2021 was a busy and productive year for the PPMD Adult Advisory Committee (PAAC), PPMD’s advisory group composed of adult members of our Duchenne and Becker community.
The PAAC successfully participated in local and federal advocacy efforts, hosted PPMD’s Annual Conference teen & adult track, and began many new initiatives to lay the foundation for an equally productive and busy 2022.
In keeping with the PAAC’s mission, the group continues to evolve their approach to elevate the lives of individuals living with Duchenne and Becker muscular dystrophy through advocacy, education, mentorship, and awareness.
Advocacy & Leadership
Advocacy remains at the forefront of the PAAC’s mission, and top of mind with all they do. A majority of the PAAC members participated in PPMD’s Virtual Advocacy Conference last March, meeting with their respective state’s representatives and sharing their experiences and thoughts.
This year, the PAAC also chose to identify an executive committee to implement the PAAC’s mission and identify gaps. The PAAC voted on 4 leadership positions to carry out meetings, organize internal working groups, and provide updates to the community.
- Steve Teal, President
- Mallory Dupree, Vice President
- D.J. Kimble, Secretary
- Jake Wesley, Historian
Applications open each fall to apply for PAAC membership the following year. We are excited to introduce you to the 2022 PAAC very soon!
Connecting the Duchenne & Becker Adult Community
The pandemic has brought a virtual world, and for many people living with a disability, this has allowed for increased inclusivity and interaction. The PAAC has prioritized virtual get-togethers by scheduling bi-weekly Zoom socials and hosting quarterly topic-specific discussions.
Some of the important themes chosen were the female perspective of living with a disability, video game adaptability, and identifying goals and life purpose. The PAAC was also approached by Google, and was offered free machine artificial intelligence training to learn how Google Cloud services can be utilized to analyze data and trends.
A mentorship program is another ongoing effort that will continue into 2022. Tweens ages 9-13 can also join socials to meet each other, as well as PAAC members. The next tween social will be on Tuesday, March 22 at 7:00 pm EST. Click here to register.
PAAC members also enjoy being connected with others in the Duchenne and Becker community at any age. If you or your child would like to be connected to a PAAC member 1:1, please fill out the online form.
The PAAC prioritizes reaching as many teens and adults living with Duchenne and Becker as possible to provide support, connection, and community. Members of the PAAC maintain and moderate a growing Facebook group and launched PAAC CHATS, a social networking platform closed to people living with Duchenne and Becker ages 16 and older. This platform is free to participants, and is available for download in the apple or google play stores, or via web at www.parentprojectmd.org/paacchats.
The PAAC has taken priority in initiating important conversations about living with a disability as well as check-in with others regarding their mental health and overall wellbeing. These social media platforms also allow the PAAC to make announcements for events and other opportunities to connect with others virtually.
Get Involved with the PAAC in 2022
The PAAC is currently working on identifying their goals and priorities for 2022, focusing on encouraging independence and facilitating personal growth and wellness. If you or your child is interested in getting involved with the PAAC, please email Pat Moeschen. The PAAC will also be hosting the teen & adult track at PPMD’s 2022 Annual Conference June 23-26 in Scottsdale, AZ!
Upcoming PAAC + Cure SMA Adults with SMA Evening Social
Join the PAAC and the Cure SMA Adult Advisory Council for a virtual social on Wednesday, Jan 26, 2022 at 07:00 PM ET! Teens and adults ages 16+ are welcome to register to attend.Join the Virtual Social >