Monthly PPMD Carrier Meetings

PPMD recognizes the unique experiences of carriers of Duchenne and Becker. To better foster a community for learning and connection, PPMD’s Dr. Mena Scavina and Patrick Moeschen invite you to a monthly virtual meeting series featuring members of the PPMD team and the medical community as guest speakers to cover topics in care, research, and community. This group aims to educate and advocate for issues that are important to carriers, whether you feel you are manifesting and have signs and symptoms, or not.

Meetings start with a presentation by a variety of specialists with expertise in caring for carriers.  Following the presentation there will be time for questions and answers as well as the opportunity to meet other carriers and to share your story. All carriers are welcome – we look forward to seeing you there.

To register for upcoming meetings, please see below. Additional topics will be added for 2025.

We want to hear from you! Reach out to us with questions at careteam@parentprojectmd.org.

Upcoming Carrier Meetings:

Wednesday, November 20, 2024 at 7:00 PM ET (Virtual)

Annie Kennedy from EveryLife Foundation for Rare Diseases will join us to discuss efforts in developing ICD-10 codes for Duchenne and Becker muscular dystrophy and the potential impact of specific codes on research and patient care.

Wednesday, December 18, 2024 at 7:00 PM ET (Virtual)

As a follow up to the October 2024 meeting, this meeting will be presented by members of the PPMD Adult Advisory Committee (PAAC) and will discuss plans for the new Carrier PAAC (CPAAC).

Previous Meetings:

• September 2024 — Recording of Dr. Loralei Thornburg’s presentation