by: Parent Project Muscular Dystrophy
End Duchenne Tour 2020: Virtual Tour Stop in Atlanta
On the morning of March 14, the Duchenne community in and around Atlanta, GA, gathered for PPMD’s first virtual End Duchenne Tour Stop of the year.
Although we made the decision to change this event from an in-person meeting just days before we were due to arrive in Atlanta, it is clear that we made the right call as we learned more about COVID-19 here in the US. Moreover, we were still joined by almost 20 families, many industry partners, and a lineup of amazing presenters.
Thank you so much for bearing with us as we made last minute adjustments and presented an abbreviated live version of our agenda. This experience is yet another testament to the versatility and strength of our community – in person or not, there was a true sense of togetherness and camaraderie.
We will be working with our amazing Connect Coordinators to host an in-person event when this time is behind us and we cannot wait to see you all again in person. Until then, stay safe and know PPMD is here for you.
Snapshot of the Day
Our End Duchenne Virtual Tour Stop began with PPMD Founding President & CEO, Pat Furlong providing historical background and current key updates on PPMD’s research, advocacy, and care programs.
JOIN THE FIGHT TO END DUCHENNE
We were then joined by Alpa Khushalani who shared her experience as a Connect Coordinator in Chicago and now as the co-coordinator of PPMD’s Connect Georgia & South Carolina! There are a lot of ways to get involved locally, including Moms/Dads Night Out, family gatherings, information sessions, and fundraising events. Alpa also talked about her experience in our Race to End Duchenne Program and encouraged everyone to join her team, as well as, the team from Rare Disease Research in the Craft Classic Half Marathon & 5K taking place on Saturday, September 12, 2020. There are 5K and Half Marathon distances available and it is a great way to come together locally to show our strength in the fight to end Duchenne. Click here to register at any time.
The Duchenne Registry
We were then joined by PPMD’s Ann Martin, CGC – the director of The Duchenne Registry and one of PPMD’s tenured Genetic Counselors. Ann provided background on the genetic implications of Duchenne, as well as the importance of genetic testing and the valuable ways you can contribute to The Duchenne Registry.
Interactive Care Panel
The final portion of our virtual stop was our interactive care panel, moderated by Pat. We are so grateful to our panel participants: Han Phan, MD, Children’s of Alabama; Eduardo Sanabria-Figueroa, PhD, Rare Disease Research; Laura Case, PT, DPT, MS, Duke Children’s Hospital; Danielle Graef, PhD, Cincinnati Children’s Hospital; and Karen Loechner, MD, PhD, Children’s Hospital of Atlanta.
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- Dr. Phan presented on the basics of Duchenne care; Dr. Sanabria presented on the current local clinical trials taking place locally (Download PDF)
- Dr. Case presented on the key elements of assessment and intervention in Physical Therapy/ Rehabilitation management in Duchenne (Download PDF)
- Dr. Graef presented on Psychosocial Care Considerations focusing on screening, intervention, evaluation and transition planning (Download PDF)
- Dr. Loechner rounded out the panel by talking about bone health and endocrine assessments while echoing the importance of continuity of team care (Download PDF)
Partner Presentations
We also are so thankful to our partners that supported this Tour Stop and our efforts this year. Please click here to view information regarding current sponsor trials and a research overview.
