Monthly PPMD Carrier Meetings

PPMD recognizes the unique experiences of dystrophinopathy carriers. 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 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. Is there a topic not listed that you are interested in? We want to hear from you! Reach out to us with suggestions or questions at careteam@parentprojectmd.org.

Upcoming Carrier Meetings:

  • January 28 | 7:00 PM ET – PPMD’s Lauren Bogue, MS, CGC, on carrier data and the Duchenne Registry
  • February 11 | 12:00 PM ET – Dr. Mayling Mah with an update on the Nationwide Studies in Carriers
  • March 25 | 7:00 PM ET  – Duchenne parent and carrier Deb Jensen on a caregiver’s experience navigating the care landscape
  • April 15 | 7:00 PM ET – Registered Dietician Grace Gough from the University of Utah on optimizing nutrition in neuromuscular disease
  • May 27 | 7:00 PM ET – Dr. Taissavalo from the University of Florida on exercise in neuromuscular disease and results of her research studies
  • June – Join us at PPMD’s 2026 Annual Conference for in-person carrier specific topics & connections
    • No virtual meeting – Sessions at Annual Conference TBA
  • July 22 | 7:00 PM ET – Conference and carrier meetings highlights
  • August – No meeting
  • September – Fall 2026 meeting dates and topics TBA

Previous Meetings:

  • September 2024: Dr. Loralei Thornburg [Watch Recording]
  • January 2025: Dr. Michaela Guglieri (Newcastle Upon Tyne Hospital, UK)
    • International Survey on Clinical Presentation and Service Provisions for Female Carriers of DMD Variants (DMD-Carriers) to Inform Care [Watch Recording]
  • February 2025: Community Discussion
  • March 2025: Jessica Hallam MSN, FNP-C (Virginia Commonwealth Health)
  • April 2025: Dr. Lauren Elman (Penn Medicine)
    • Neurologic Care for Carriers
  • May 2025: Dr. Shaida Khan (Parkland Memorial Hospital/UT Southwestern)
  • June 2025: PPMD Annual Conference- Las Vegas, NV
    • Sharing Lived Experiences
    • Updates in Research and Care for Carriers [Watch Recording]
  • September 2025: Advocacy, Newborn Screening, and PPMD’s Lighthouse Workshops [Watch Recording]
  • October 2025: Dr. Teresa Wang
  • November 2025: Kayla Banks, MS, CGC (PPMD)
  • December 2025: Dr. Claudia Senesac (University of Florida)
    • Managing fatigue, pain, and weakness; Incorporating exercise and PT [Watch Recording]