Maria Kefalas, Dean and Teryn Suhr receive the 2025 Patient Advocate Leader Awards скачать в хорошем качестве

Maria Kefalas, Dean and Teryn Suhr receive the 2025 Patient Advocate Leader Awards

Plus presentation of 2025 Young Investigator Awards A heartfelt congratulations to Maria Kefalas, the recipient of the esteemed WORLDSymposium 2025 Patient Advocate Leader (PAL) Award. Maria, along with her late husband Pat Carr, founded the Calliope Joy Foundation which provided funding to help launch the Leukodystrophy Center of Excellence at the Children’s Hospital of Philadelphia. She is a nationally recognized parent advocate, and although it was too late for her daughter Calliope (Cal), Maria championed the clinical trials and the therapy, and the FDA recently approved the first gene therapy to treat MLD. WORLDSymposium also extends sincere congratulations to Dean & Teryn Suhr, as they were honored with the 2025 Patient Advocate Leader (PAL) Award. Dean & Teryn co-founded the MLD Foundation and have been involved in over a dozen MLD research projects, and they continue to work to advance rare disease policies & regulations. The death of their youngest daughter, Darcee, plunged them into their 2+ decades of work for metachromatic leukodystrophy. The Suhrs have also been attending, educating, and networking at WORLDSymposium for the last 20 years. Timestamps 00:00 Dean and Teryn Suhr receive the 2025 Patient Advocate Leader Award 03:45 Teryn Suhr's remarks 05:30 Dean Suhr's remarks 07:34 Maria Kefalas receives the 2025 Patient Advocate Leader Award 11:54 Maria Kefalas' remarks 18:40 Presentation of the 2025 Young Investigator Awards