Terri L. Klein to receive the WORLDSymposium 2021 Patient Advocate Leader (PAL) Award

Terri Klein, NPGC  - Patient Advocate Leader Award Recipient 2021Terri Klein, NPGC is the President and CEO at the National MPS Society, USA. Her undergraduate work was in Human Resources and her graduate work was in Nonprofit Management. She is currently completing her MPA from North Carolina State University. Her expertise is in organizational development, multi-tier fund development, and technology development. Her portfolio includes over 36 million in secured corporate prospects, and nonprofit gifts. Terri began her nonprofit career in 2004 and became the first Executive Director of the ISMRD after leaving her corporate career.

Since 2002, the Society has funded $17 million in research and family support programs. She has worked to increase the membership of the Society by over 310% and has expanded the Society Team to include science, social services, and communication. Her focus is on diseases with no treatment, bridging bench and translational research to clinical application, the newborn screening program, patient secured data, and access to therapies. In addition, she administers patient advocacy with NIH, NCATS, NINDS, FDA, RDCRN, HRSA, and the ACHDNC.

She is the co-Chair of the International MPS Network (IMPSN) and COPA, part of the LDN. The IMPSN focuses on global humanitarian efforts for MPS. She is a member of the North Carolina Rare Disease Coalition, and mentors’ other patient communities to strengthen their voice, and advocates at both the federal and state level.

Terri is a founding member of the Mucolipidosis Research Collaborative Network. Recently formed in 2019, this novel group of scientists, researchers, clinicians, and patient advocates are working in tandem to discover the scientific answers to provide therapies for ML II/III. She is a wife and mother of four, including Jennifer (28), her youngest that suffers from ML III.

Terri will be presented with the WORLDSymposium 2021 Patient Advocate Leader Award on Monday, February 8, 2021 at 9:00 AM Pacific Time.

About the WORLDSymposium Patient Advocate Leader (PAL) Award

Each year, WORLDSymposium recognizes one individual for patient advocacy leadership in the field of lysosomal disease. The Patient Advocate Leader (PAL) award will be presented at WORLDSymposium 2021 on Monday, February 8, 2021 at 9:00AM Pacific Time.

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.

Past Award Recipient:

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