Christine Waggoner Received 2023 Patient Advocate Leader (PAL) Award

Past and Present Patient Advocate Leader Award Recipients
Chester B. Whitley, Cara O’Neill, Christine Waggoner, Terri L. Klein, and Mark Dant

Congratulations to Christine Waggoner, the recipient of the WORLDSymposium 2023 Patient Advocate Leader (PAL) Award. After reviewing numerous nominations, and considering many amazing individuals, the WORLDSymposium 2023 Awards Committee has selected Christine as the recipient of the 2023 PAL Award. Christine founded the Cure GM1 Foundation in April 2015 in honor of her daughter Iris and all those affected by GM1 gangliosidosis. Christine’s work at Cure GM1 has involved a broad range, including animal models, biomarkers, gene therapy, enzyme replacement therapy, patient registries, patient reported outcomes, newborn screening and the first-ever GM1 caregiver preferences study.

Christine received a B.A. from Brown University where she studied Visual Art and Computer Science. The combination of studies in art and technology served as a basis for her career in computer graphics and 3D feature film animation.  Christine holds 9 patents in computer graphics and has contributed to publications both pertaining to computer graphics and GM1 gangliosidosis. In 2017, Christine received the Sanofi TORCH award for outstanding patient advocacy.  She is also the recipient of an award for Outstanding Supporting Visual Effects in a Motion Picture and she is a member of the Association of Computing Machinery.  

The 2023 Patient Advocate Leader Award was presented at 7:30 AM EST on Thursday, February 23, 2023, at the 19th annual WORLDSymposium in Orlando, Florida.

About the WORLDSymposium Patient Advocate Leader (PAL) Award

Each year, WORLDSymposium recognizes one individual for patient advocacy leadership in the field of lysosomal disease.

WORLDSymposium’s Patient Advocate Leader (PAL) Award program began in 2016 in order to recognize individuals contributing directly to lives of patients and families dealing with a lysosomal disease through disease awareness and education, community mobilization, non-profit development and/or good governance activities, patient care, and support programs. The recipient is presented with an engraved award and is recognized at the WORLDSymposium scientific meeting held annually in February each year.

An announcement of the award recipient is included in the February special lysosomes issue of Molecular Genetics and Metabolism. (This award is given on a yearly basis, but can be omitted in any given year at the discretion of the Planning Committee.) Nominations are solicited annually from members of the lysosomal disease community, planning committee members and attendees of WORLDSymposium.

The 2023 Patient Advocate Leader Award will be presented at 7:30 AM EST on Thursday, February 23, 2023, at the 19th annual WORLDSymposium in Orlando, Florida.

Past Award Recipients:

2016 Barbara Wedehase, National MPS Society
2017 Christine Lavery, UK Society for Mucopolysaccharide Diseases
2018 Jack Johnson, Fabry Support & Information Group
2019 Mark Dant, EveryLife Foundation for Rare Diseases, National MPS Society
2020 Cara O’Neill, MD, Cure Sanfilippo Foundation
2021 Terri L. Klein, NPGC, National MPS Society, USA
2022 Sue Kahn, National Tay-Sachs & Allied Diseases Association (NTSAD)