Daniel Lewi to Receive the 2027 Patient Advocate Leader (PAL) Award
Daniel Lewi is the Co-founder and CEO of the Cure & Action for Tay-Sachs (CATS) Foundation. He established the charity with his wife, Patrícia, in 2011 after their eldest daughter, Amélie, was diagnosed with Tay-Sachs disease at just 15 months old. At the time, there was no dedicated UK organisation supporting families affected by Tay-Sachs and Sandhoff disease.
Since then, Dan has helped grow CATS into an internationally recognised patient organisation providing practical and emotional support to families while driving awareness, research and the development of potential treatments for Tay-Sachs and Sandhoff disease. His work has included establishing patient registries, supporting clinical research and trials, developing resources for newly diagnosed families, and working directly with researchers, pharmaceutical and biotechnology companies to ensure the patient voice is embedded throughout therapeutic development.
Dan has also helped bring together the European and Global GM2 gangliosidoses community by working with healthcare professionals and advocacy organisations to improve standards of care and collaboration across countries. He has become a recognised international patient advocate, contributing to regulatory and research discussions and speaking and publishing on patient engagement, real-world data and the needs of families living with rare neurodegenerative diseases.
In recognition of his remarkable and inspiring work, Mr. Lewi will receive the 2027 Patient Advocate Leader Award on Tuesday, February 2, 2027, at 08:00 PST, at the 23rd Annual WORLDSymposium in San Diego, California.
About the WORLDSymposium Patient Advocate Leader (PAL) Award
Each year, WORLDSymposium recognizes individuals for patient advocacy leadership in the field of lysosomal disease.
Award Nominations Deadline: September 1, 2026.
An announcement of the award recipient is included in the February 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 2027 Patient Advocate Leader Award will be presented at 08:00 PST on Tuesday, February 2, 2027, at the 23rd Annual WORLDSymposium in San Diego, CA.
Past Award Recipients:
2026 Bob Stevens, MPS Society and Rare Disease Research Partners (RDRP) 2025 Maria Kefalas, Calliope Joy Foundation, and Cure MLD Foundation
2025 Dean and Teryn Suhr, MLD Foundation
2024 Alan Finglas, MSD Action Foundation & SavingDylan.com
2023 Christine Waggoner, Cure GM1 Foundation
2022 Sue Kahn, National Tay-Sachs & Allied Diseases Association (NTSAD)
2021 Terri L. Klein, NPGC, National MPS Society, USA
2020 Cara O’Neill, MD, Cure Sanfilippo Foundation
2019 Mark Dant, EveryLife Foundation for Rare Diseases, National MPS Society
2018 Jack Johnson, Fabry Support & Information Group
2017 Christine Lavery, UK Society for Mucopolysaccharide Diseases
2016 Barbara Wedehase, National MPS Society