by: Parent Project Muscular Dystrophy
End Duchenne Tour 2020: Virtual Tour Stop in Milwaukee
On Saturday, April 25, we spent the morning with the Duchenne community in and around Milwaukee, WI for another End Duchenne [Remote] Tour stop. Although the current COVID-19 pandemic prevented us from meeting in person, our community came together once again to learn, share updates, and spend time together — including some 20 families, our industry partners, and healthcare providers from our certified clinics in Wisconsin.
We want to thank the neuromuscular care teams from two Wisconsin-based PPMD Certified Duchenne Care Centers (CDCCs), Children’s Wisconsin and American Family Children’s Hospital, for supporting us in this effort. Key members of these teams joined us for the interactive care panel, and provided helpful guidance and support to families during this uncertain time.
Snapshot of the Day
Our day began with PPMD’s SVP of Clinical Care, Rachel Schrader, MS, APRN, CPNP-PC, providing historical background and current key updates on PPMD’s research, advocacy, and care programs.
JOIN THE FIGHT TO END DUCHENNE
We were also joined by Gretchen Egner, a parent, runner, and Connect Coordinator of PPMD’s Connect Wisconsin. Gretchen spoke about getting involved locally and is looking forward to gathering families once it is safe to do so. Gretchen is an active runner in our Race to End Duchenne Program and encouraged everyone to join her in the 2020 Shorewood Hot Cider Hustle. This race takes place on October 24, 2020, and runners can choose between a half marathon or 5K distance. Click here to register!
The Duchenne Registry
We were joined by PPMD’s Ann Martin, MS, CGC – the director of The Duchenne Registry and one of PPMD’s Genetic Counselors. Ann provided background on the genetic implications of Duchenne, as well as the importance of genetic testing and the valuable ways can contribute to The Duchenne Registry.
Interactive Care Panel
The final portion of our virtual tour stop was an interactive care panel, moderated by Rachel (Download PDF). We want to thank Matt Harmelink, MD, Children’s Wisconsin; Jennifer Kwon, MD, American Family Children’s Hospital; Carrie Barker, MD, American Family Children’s Hospital; and Shana Sigmund, DPT, Children’s Wisconsin.
- Harmelink presented on the current research and clinical trials taking place locally at Children’s Wisconsin (Download PDF)
- Kwon presented on the value of comprehensive neuromuscular care (Download PDF)
- Barker presented on pulmonary standards of care and the importance of prevention and early intervention in Duchenne (Download PDF)
- Shana Sigmund, a physical therapist, spoke about her role in in assessment and intervention when working with Duchenne patients (Download PDF)
Partner Presentations
We are also 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, and submit questions at any time.
NEXT UP
PPMD’s next End Duchenne [Remote] Tour stop will be in Long Island, NY on Saturday, May 30.
Last week we announced PPMD’s Annual Conference is going virtual in July. Be sure to sign up for PPMD’s Newsletter and follow PPMD’s Facebook page to stay up-to-date with conference plans.
Though nothing is ‘normal’ about our new normal, we so appreciate the time we spend with you and please know PPMD is here to support you however we can.
