CMD Advocacy: Acting on the hopes of your heart

jackie.nelson@curecmd.orgCure CMD, Advocacy and Outreach

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

What is advocacy?

2011 Cure CMD: Day on the Hill

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

Meeting Outline

1. Inform them about Cure CMD2. Tell your story (2-3 Minutes)

3. Ask for their support on our key initiatives4. Offer yourself as a resource

5. Take a picture!6.Write a thank you note.

Key Concerns

1. Suboptimal and Varied Care 2. No Treatment or Cure

Legislative Advocacy Goals:

1. Encourage NIH Funding2. Call out CMD Funding at NIH

3. Introduce and support amendment to Compassionate Allowances4. Hearing on CMD

Other ways to connect with legislators:

1. Write a letter or make a call2. Send news clippings to your congressional offices

Tips:

1. Identify yourself as a constituent2. Ask for support on one issue

3. Thank them for their support and service.

Get in the News!

1. Press Release2. Editorial

3. Letter to the Editor4. Feature Story

5. Radio Interview

Story hooks:1. After a visit with Congressional Member

2. Rare Disease Day – February 283. Mother’s Day or Father’s Day

4. Disability Awareness Month in October5. Cure CMD Month - February

Why should people care about finding a treatment for CMD?

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

Opportunity: August Recess!Schedule a visit with your Congressional members in

your home state

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

Dr. Anne RutkowskiAdvocate Extraordinaire

 

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