Guest blog by Jennifer Wallace, physical therapist and project manager of CureDuchenne Cares.
Yesterday was an important day for me since it was my last day working in a local pediatric physical therapy clinic. Although I have loved my time at this clinic, I have a strong passion for working with my Duchenne patients. I have been fortunate to be able to specialize in Duchenne for several years, and to meet so many wonderful Duchenne families, that have also become my friends. As of today, I will be able to spend more time with individual Duchenne families and to further support the CureDuchenne Cares parent education and outreach program. I’m honored and grateful to be able to follow my passion and help boys across the country with physical therapy and standard of care for Duchenne.
My first evaluation as a licensed physical therapist was with an undiagnosed boy who exhibited all of the signs of Duchenne. I have known the Miller family since the time of their son’s diagnosis. The Millers, who founded CureDuchenne, introduced me to other Duchenne families and I have specialized in physical therapy for Duchenne patients ever since. In fact, I created the Duchenne Therapy Network where I could include a comprehensive care program.
I am dedicated to helping families and boys who have been diagnosed with Duchenne. I firmly believe that there is more that we can be doing including earlier diagnosis, developing a standard of care based on the most recent information, using a comprehensive care management model, maximizing equipment and technology, and ensuring a better continuum of care.
I have developed a passion for working with the boys, families and professionals connected to the diagnosis of muscular dystrophy. The boys and young men that I treat have become like friends to me and I truly enjoy our conversations during physical therapy sessions. I find it extremely beneficial to create an open and trusting relationship with all who are involved in the boy’s care, especially with the boys themselves.
The CureDuchenne Cares program provides an unmet need in the community. Our goal is to provide information and resources to help keep boys walking as long as possible as drugs are being developed to treat Duchenne. I’m proud to be part of CureDuchenne Cares and helping Duchenne families. We will be travelling across the country providing parent workshops and continuing education courses for physical therapists. Here is the current schedule.
June 5, San Diego, CA – physical therapist continuing education course
June 6, San Diego, CA – parent/caregiver workshop
June 26, Long Beach, CA – physical therapist continuing education course
June 27, Pasadena, CA – parent/caregiver workshop
July 17, Maple Valley, WA – physical therapist continuing education course
July 18, Maple Valley, WA – parent/caregiver workshop
More sessions will be scheduled throughout the year. Please contact me at email@example.com or call CureDuchenne at 949-872-2552 if you are interested in hosting a session in your area.
Be sure to subscribe to our YouTube channel for information and instructional videos on stretching, equipment and Duchenne care.
Thank you to BioMarin Pharmaceutical, PTC Therapeutics and Sarepta Therapeutics for supporting CureDuchenne Cares. This helps us go to more markets and reach more Duchenne families with critical information where they live. We applaud all pharmaceutical companies and academic researchers who are diligently working on finding treatments for Duchenne.
Thank you to CureDuchenne for continuing to be an innovator and leader in funding Duchenne research. They have been dedicated to finding a cure for all boys and young men with Duchenne. The Miller family and CureDuchenne are the reason that I am able to help so many other families all around the world.
Most of all thank you to those impacted with Duchenne and families for inspiring me every day.