Transcript CMD Advocacy: Acting on the hopes of your heart

CMD Advocacy:
Acting on the hopes of your heart
[email protected]
Cure 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 CMD
2. Tell your story (2-3 Minutes)
3. Ask for their support on our key initiatives
4. 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 Funding
2. Call out CMD Funding at NIH
3. Introduce and support amendment
to Compassionate Allowances
4. Hearing on CMD
Other ways to
connect with legislators:
1. Write a letter or make a call
2. Send news clippings to your congressional
offices
Tips:
1. Identify yourself as a constituent
2. Ask for support on one issue
3. Thank them for their support and service.
Get in the News!
1. Press Release
2. Editorial
3. Letter to the Editor
4. Feature Story
5. Radio Interview
Story hooks:
1. After a visit with Congressional Member
2. Rare Disease Day – February 28
3. Mother’s Day or Father’s Day
4. Disability Awareness Month in October
5. 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 Rutkowski
Advocate Extraordinaire
“Never doubt that a
small group of
citizens can make a
difference. Indeed,
it is the only thing
that ever has.”
-Margaret Mead