Cystinosis Research Network: Your Advocacy Group
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Cystinosis Research Network: Your Advocacy Group

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  • 1. Cystinosis Research Network: Your Advocacy Group Evergreen Marriott Resort Stone Mountain, Georgia July 16 – 18, 2009
  • 2. 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.
  • 3. 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
  • 4. Cystinosis Research Network-Your Advocacy Group Dedicated to achieving excellence in governance  Board of Directors  Executive Committee  Scientific Review Board  Medical and Professional Advisory Committees  Committee Members - Membership
  • 5. 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
  • 6. 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
  • 7. Cystinosis Research Network- Your Advocacy Group Focused on comprehensively addressing the community’s needs  Education and Awareness  Family Support  Development  Research
  • 8. 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)
  • 9. Cystinosis Research Network: Your Advocacy Group Launch of New Logo and Website www.cystinosis.org
  • 10. 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
  • 11. 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
  • 12. 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
  • 13. 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
  • 14. 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