One of the most impactful aspects of the GFPD Family and Scientific Conferences is the incredible community of professionals who come together to support GFPD Warriors and their families. During the 2024 Family and Scientific Conference Mariana, a 16-year-old GFPD Warrior from Colombia, experienced this remarkable community firsthand. Sadly, the impact of the disease progression resulted in her wheelchair becoming increasingly uncomfortable, unsafe, and inadequate for her needs.
During professional pop-ins, a time designated for professionals, students, and families to connect, share, and learn from each other, two physical therapists quickly recognized Mariana’s difficulties and safety issues with her wheelchair. Melissa Maule, MPT, DPT, intent on making a difference, reached out to Katie Sacra, the Director of Family Programs, voicing her concerns and willingness to assist Mariana. Christy Corbin,PT a Physical Therapist with Tidelands, who had previously facilitated essential support and wheelchair adjustments for Mariana after meeting her at the 2022 GFPD Conference, echoed these concerns and was ready to offer help in any way possible.
Dr. Maule reached out to Shannon Bowles, PT ATP/SMS at Children’s National Rehabilitation & Specialized Care in Washington, DC, who helped coordinate assistance for Mariana. From there, Ron Graham, Rehabilitation Engineer at CNRSC, and Amanda Hall, PT at CNRSC, joined the effort. Although the window of time to help was limited, the willingness to help GFPD Warrior, Mariana was immense!
Together, a plan was quickly formed, and thanks to the compassionate intervention of these professionals, Marianna was soon on her path to safety and increased independence. Rod Landa, the volunteer Spanish translator provided by the GFPD for the family during the conference, accompanied Christy Corbin, Mariana, and her parents to be fitted for a new wheelchair.
CNRSC generously donated a power wheelchair and ensured it fit perfectly to Mariana’s needs to keep her safe, comfortable, and now more independent than when she arrived in Washington, DC. The joy on Mariana’s face and the relief in her parents’ expressions made it a truly magical moment for everyone involved.
This heartwarming story is just one example of the dedication and compassion that define the GFPD community, showcasing the profound impact these conferences have on the lives of GFPD Warriors and their families.
Written By Margaret Reimann and Katie Sacra
