cystinosis research network: your advocacy group
TRANSCRIPT
Cystinosis Research Network:
Your Advocacy Group
Evergreen Marriott Resort
Stone Mountain, Georgia
July 16 – 18, 2009
Cystinosis Research Network-Your Advocacy Group
Vision: The discovery of improved treatments and ultimately a cure for cystinosis
Mission: CRN is a volunteer, non-profit organization dedicated to advocating and providing financial support for research, providing family assistance and educating the public and medical communities about cystinosis.
Cystinosis Research Network-Your Advocacy Group
How does CRN fit in? Cystinosis Australia
Cystinosis Foundation Germany
Cystinosis Foundation Ireland
Cystinosis Foundation UK
Cystinosis Foundation USA
Cystinosis Mexico AC
Cystinosis Research Foundation
AIRG
Genetic Alliance
National Organization for Rare Disorders
Orphan Europe
National Institutes of Health
Pharmaceutical Companies
Collaboration amongst all of the organizations is critical to our success
Cystinosis Research Network-Your Advocacy Group
Board of Directors
Executive Committee
Scientific Review Board
Medical and Professional Advisory Committees
Committee Members - Membership
Dedicated to achieving excellence in governance
Cystinosis Research Network-Your Advocacy Group
Board of Directors
Cheri Friend Karen Gledhill Christy Greeley
Dan Julian MB Krummenacker Britney LeBeau
John Maccarone Kathy Mandrel Mack Maxwel
Frankie McGinnis José Morales Jill Morrill
Paula Shal John Shepperd Elva Smith
Lorna Smith Tahnie Woodward Jen Wyman
Cystinosis Research Network-Your Advocacy Group
Executive Committee
President and Executive Director - Christy Greeley
VP Development - Jen Wyman
VP Education and Awareness - Paula Shal
VP Family Support - Cheri Friend
VP Research - Elva Smith
Secretary - Karen Gledhill
Treasurer - Brittney LeBeau
Cystinosis Research Network- Your Advocacy Group
Focused on comprehensively addressing the
community’s needs
Education and Awareness
Family Support
Development
Research
Cystinosis Research Network-Your Advocacy Group
Education and Awareness
Representation at Professional Conferences
Leadership roles with umbrella organizations -
Marybeth Krummenacker nominated to NORD
Board of Directors
Proactive communications - electronic (Support
Group Website) and hardcopy mediums (Bi-
annual Newsletter)
Cystinosis Research Network: Your Advocacy Group
Launch of New Logo and Website
www.cystinosis.org
Cystinosis Research Network-Your Advocacy Group
Family Support
Proactive identification of newly diagnosed
families
On-going communication and support of
families through all stages
Extensive archives of relevant literature
Online support groups
Biennial Family Conference
Cystinosis Research Network-Your Advocacy Group
Development
CRN has raised and committed in excess of $2.2
million since its inception
2010 fundraising goal of $1.0 million
Fundraising strategy places emphasis on
grassroots events
Fundraising resources available
Cystinosis Research Network-Your Advocacy Group
Research
Coordination of Medical Advisory Committee
and Scientific Review Board bodies
Manage Call For Research Proposals
Oversight of funded research projects
Communication and distribution of research
results/status to our community
Creation of Clinical Fellowship at NIH
Cystinosis Research Network-Your Advocacy Group
Future Commitments
2009 new research grants pending Board
approval
2010 Congress of the International Pediatric
Nephrology Association (IPNA)
2011 Family Conference – Bay Area, California
Cystinosis Research Network-Your Advocacy Group
“What lies behind us, and what lies before us are tiny
matters compared to what lies within us.”
Ralph Waldo Emerson