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“80% of success is showing up.” -Woody Allen

CMD Advocacy: Acting on the hopes of your heart jackie.nelson@curecmd.org Cure CMD, Advocacy and Outreach. “80% of success is showing up.” -Woody Allen. What is advocacy?. 2011 Cure CMD: Day on the Hill.

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“80% of success is showing up.” -Woody Allen

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  1. CMD Advocacy: Acting on the hopes of your heartjackie.nelson@curecmd.orgCure CMD, Advocacy and Outreach

  2. “80% of success is showing up.” -Woody Allen

  3. What is advocacy?

  4. 2011 Cure CMD: Day on the Hill

  5. Goals on Legislative Visits-Help CMD become personal for each legislator-Raise visibility and understanding about CMD-Invite their support on key initiatives at Cure CMD

  6. Meeting Outline1. Inform them about Cure CMD2. Tell your story (2-3 Minutes)3. Ask for their support on our key initiatives4. Offer yourself as a resource5. Take a picture!6.Write a thank you note.

  7. Key Concerns1. Suboptimal and Varied Care 2. No Treatment or Cure

  8. Legislative Advocacy Goals:1. Encourage NIH Funding2. Call out CMD Funding at NIH3. Introduce and support amendment to Compassionate Allowances4. Hearing on CMD

  9. Other ways to connect with legislators:1. Write a letteror make a call2. Send news clippings to your congressional offices

  10. Tips:1. Identify yourself as a constituent2. Ask for support on one issue3. Thank them for their support and service.

  11. Get in the News!1. Press Release2. Editorial3. Letter to the Editor4. Feature Story5. Radio Interview

  12. Story hooks:1. After a visit with Congressional Member2. Rare Disease Day – February 283. Mother’s Day or Father’s Day4. Disability Awareness Month in October5. Cure CMD Month - February

  13. Why should people care about finding a treatment for CMD?

  14. It’s important to fund rare disease research for a variety of reasons: -Informs universal health conditions-Makes economic sense-Living with/treating rare diseases is expensive-It’s a heavy burden for children

  15. Opportunity: August Recess!Schedule a visit with your Congressional members in your home state

  16. Get Ready for 2012! Cure CMD - Day on the Hill

  17. Dr. Anne RutkowskiAdvocate Extraordinaire

  18. “Never doubt that a small group of citizens can make a difference. Indeed, it is the only thing that ever has.” -Margaret Mead

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