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, January 22, 2025 at 12:00 PM ET (Virtual)

Please note that this meeting will take place during the DAYTIME, 12:00 PM ET.

Michela Guglieri, MD, a Senior Clinical Lecturer and Consultant Neurologist at Newcastle University and Newcastle Hospitals NHS Foundation Trust, will join us to speak to her experience on the care, management, and ongoing research in carriers/females with dystrophinopathy. She will share information about the survey she and her team have sent out to European providers regarding carrier care and how this will guide future natural history studies.

Dr. Guglieri’s presentation will be followed by a discussion with PPMD’s Lauren Stanford about the upcoming Advocacy Conference in Washington, D.C.

Previous Meetings:

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