Patient Advocacy Committee

Introduction

When the UC Irvine Sue and Bill Gross Stem Cell Research Center (SCRC) was established, representatives of various patient constituent groups were invited to be a part of an initial Patient Advisory Committee (PAC) for the purpose of supporting SCRC as it has progressed. With the recent dedication and occupation of Gross Hall, and the associated expectations of continued rapid scientific discovery and application to medicine, now is an opportune time to reform and step up the involvement and support of the patient community. While the former Patient Advisory Committee operated in response to SCRC initiative, the renamed and reformed Patient Advocacy Committee is intended to be proactive, seeking out opportunities to advance the goals of the SCRC that, in turn, hold the promise and ultimately the reality, of treatments and cures for specific diseases and conditions.

 

The mission of the Patient Advocacy Committee (PAC) is to:
  • Provide a cohesive voice for the SCRC within PAC members’ respective and collective patient communities,
  • Provide SCRC staff with ongoing understanding of disease-specific impacts and priorities from the patient perspective,
  • Facilitate community awareness and support for the SCRC in the greater Orange County area.

 

Action Plan

The PAC is currently seeking individuals to represent one or more patient perspectives related to the research foci of the SCRC’s research faculty. PAC members will be expected to:
  • Meet with SCRC researchers to understand the breadth and depth stem cell initiatives at UCI and to help identify local and relevant patient groups.
  • Set into place an operating infrastructure for coordinating the PAC activities with the SCRC.
  • Coordinate SCRC outreach and education activities to patient-based organizations.
  • Guide the selection, prioritization and implementation of future PAC actions in support of the SCRC.

Specific patient perspectives that need representation on the PAC include liver dysfunction, retinal eye conditions, spinal cord damage, Alzheimer’s disease, and others. [hyper link to Patient Advocacy Committee Members and Interests table below] Interested individuals are encouraged to contact Evan C. Henry, Interim PAC Chair (cpghenry@cox.net) or the SCRC directly (stemcell@uci.edu).

 

Patient Advocacy Committee Members and Interests

PAC Member Patient Interest SCRC Research Focus SCRC Faculty
Evan Henry Parkinson’s disease   Matthew Blurton-Jones
Frances Saldana Huntington’s disease Leslie Thompson
Nan Luke

Multiple Sclerosis

Alzheimer’s disease

 

Additional Resources