Connect with the Community
Having a diagnosis of Duchenne, Becker or as a carrier can sometimes feel isolating. But you are not alone. PPMD offers a variety of ways to find support and connection within the community
Find a local Connect Group
PPMD Connect groups are regional parent-led volunteer groups and act as a local resource, support, and an opportunity to connect with other families in your region. While these 30+ regional groups serve many functions, they primarily exist to help you along this journey. No one needs to go through this experience alone. Finding families to connect with will help you to know that there is hope and that you have support whenever you need it.
The PAAC: GET INVOLVED WITH THE TEEN & ADULT COMMUNITY
The PPMD Adult Advisory Committee (PAAC) amplifies the teen and adult voices of individuals living with Duchenne and Becker through advocacy, education, mentorship, and awareness. The PAAC hosts regular virtual socials for the teen and adult community to give people with Duchenne and Becker a place to connect and discuss topics that are important to daily life. Learn more.
PPMD’S TWEEN SOCIALS
PPMD’s quarterly virtual Tween Socials are a chance for people with Duchenne/Becker ages 9-14 to get together, play some games, and socialize with their peer group. Learn more.
PPMD’s SIBS CONNECT
PPMD’s Sibs Connect group engages individuals that have siblings with Duchenne and Becker, and fosters connecting with other siblings, sharing concerns and ideas, and supporting siblings at every step of their journey. The group is run by siblings, for siblings and for now is geared toward those ages 16 and older. We will expand to younger siblings in the future! Learn more.
PPMD’s Dads Meetings
PPMD is proud to offer monthly virtual meetings for fathers (and father figures) who have children affected by Duchenne & Becker. These informal meetings are a way to connect with others, share experiences and practical life tips, and more. Find out how to get involved here.
PPMD’s Grandparents Group
As a grandparent, you may feel unsure of how to best support your grandchild and your adult child. Learn more about PPMD’s support for grandparents (& extended family members) here.
Carriers
PPMD recognizes the unique experiences of dystrophinopathy carriers. To better foster a community for connection and learning, PPMD hosts monthly virtual meetings with guest speakers to cover topics in care, research and community. In this group, you don’t have to explain yourself or what being a carrier means. Learn more about these meetings here.
Lighthouse Workshops
PPMD Lighthouse Workshops, led by Rachel Callender, provide a safe and supportive space to build stronger connections and deeper insights about life and identity that go beyond diagnosis and management. Learn more about upcoming sessions here.
Looking for other connections or would like to connect 1:1 with another family? Reach out to Nicole@parentprojectmd.org or schedule time to meet through our PPMD For You Program here. PPMD is here to ensure one has to navigate this journey alone.
