Allison Peck is a graduate of Georgia Tech with a bachelor’s degree in industrial engineering. Starting her career as a manufacturing engineer and project manager, she has continued her professional experience with website design and small business management. Peck currently serves as a board member and volunteer treasurer for Cure VCP Disease, a rare disease patient advocacy organization. She is committed to doing everything in her power to aid in the effort to help her husband, a rare disease patient, find a cure for valosin-containing protein (VCP) disease. Peck has been a key contributor in introducing patient-powered research platforms to the community including the Cure VCP Disease patient registry with CoRDS (Ikenaga 2020), the AllStripes patient medical records platform, and a functional measures study with Nationwide Children’s Hospital and Casimir. Through these initiatives, successful collaboration between researchers and patient advocacy has resulted in meaningful patient-reported data collection, effective clinical trial design and efficient study start up. Peck’s greatest accomplishment thus far is creating and leading the VCP Standard of Care Consortium to elevate medical care for VCP patients. She scoped the project, recruited over 40 experts to the team, facilitated the consortium meetings and navigated roadblocks in achieving published consensus guidelines (Korb 2022). Through becoming an ambassador Peck hopes to better serve her fellow rare disease community members through sharing her experiences and learning best practices.
Involvement with PCORI
Mentorship Program Participant