Terri L. Klein received the WORLDSymposium 2021 Patient Advocate Leader (PAL) Award
Terri 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 was presented with the WORLDSymposium 2021 Patient Advocate Leader Award on Tuesday, February 9, 2021 at 9:00 AM Eastern Standard Time (EST).