On April 19th and 20th, PPMD launched our brand new PPMD Together meeting series in Cincinnati, Ohio. The date and location held immense significance as we gathered to commemorate 30 years since the incorporation of PPMD in this very city in April 1994. Reflecting on 30 years of progress, our PPMD Together: Cincinnati meeting was not just a commemoration but an earnest commitment to the dynamic needs of our community, bringing together families, industry partners, care providers, and advocates in a collaborative effort.

On Friday evening, PPMD community members, including families, members of the Cincinnati Children’s Hospital neuromuscular clinic team, industry partners, and others, came together for a social gathering. During the event, PPMD board member Michelle Furlong presented her mother and PPMD’s Founding President & CEO Pat Furlong with Cincinnati Mayor Aftab Pureval’s proclamation declaring April 19, 2024, as “Patricia Furlong Day.” The official proclamation recognizes Pat’s unwavering dedication and contributions to the Duchenne community over the past 30 years. 

On Saturday, PPMD kicked off a full day of programming with a resource fair featuring care and support educational materials. Physical therapists Michelle McGuire and Ann McCormick, social worker Christie Stewart, Lisa Reebals, APRN, and Dr. Irina Rybalsky from Cincinnati Children’s Hospital’s neuromuscular team were able to welcome families and provide helpful resources in a smaller, more intimate setting. Attendees were also able to learn about various ways to get involved with the PPMD community.

Pat Furlong engaged the group in a meaningful conversation about the power of community, and how it has led to progress and advancement in the field of Duchenne over the past 30 years. 

 

 

 

 

To demonstrate how the larger community works together, PPMD’s Vice President of Clinical Care and Education Rachel Schrader, MS, APRN, CPNP-PC, moderated a panel discussion about the impact of advocacy on the development of and access to therapies, advancements in care, and innovative research. Thank you to Mike Storey, PharmD (Nationwide Children’s Hospital), Dr. Emily Hayes (Nationwide Children’s Hospital), Jason Dempsey (Duchenne parent), and PPMD’s Senior Director of Advocacy Lauren Stanford for participating in this crucial conversation. 

We were also joined by six industry partners with approved and investigational therapies for Duchenne. Our industry partner representatives played an active role in the conversations and led intentional discussions with families in this smaller setting. Thank you to Catalyst Pharmaceuticals, Edgewise Therapeutics, NS Pharma, Pfizer, Inc., PTC Therapeutics, and Sarepta Therapeutics for sponsoring this PPMD Together event. 

The event culminated in a community discussion focused on quality of life, family dynamics, and the importance of finding your “us.” Pat Furlong was joined by Duchenne parents Holly Hudson, Chris Bennett, and Tammy and Chris Cate, Duchenne sibling Hayden Grow, and Seth Cate, a young adult with Duchenne, in this dynamic conversation. 

PPMD Together regional meetings are about coming together, sharing experiences, and shaping a future where every individual affected by Duchenne and Becker can thrive. Thank you to all those who joined us for these important, heartfelt discussions in Cincinnati. 

Upcoming Events

Save the date for our next PPMD Together event in Seattle, Washington, taking place September 21, 2024! Additional details and registration information coming soon. For those unable to attend in-person or interested in participating virtually, stay tuned for more information about our PPMD Together: Virtual Edition, taking place in November 2024 (date to be announced soon). Learn more about our PPMD Together meeting series here.

We are looking forward to bringing together the Duchenne and Becker community at PPMD’s 30th Annual Conference, taking place June 27-29, 2024, in Orlando, Florida. PPMD’s Annual Conference is the largest global gathering of Duchenne and Becker families. Together, we address the most relevant issues, challenges and opportunities, share our collective triumphs and tribulations, our hopes and fears—in the most meaningful way—as ONE. Learn more and register here.