Alopecia Areata Awareness Day on the Hill
              June 29, 2007
         Overview of Briefing

   Federal perspective

   What to expect

   “Dos and Don’ts” of a Congressional

   What next?
        What’s Government Got to Do With It?

   Both House & Senate determine National Institutes of
    Health (NIH) Funding
   NIH funding affects
      National Institute of Arthritis & Musculoskeletal &
       Skin Diseases (NIAMS) funding
      Skin Disease Research
      Alopecia Areata Grants
      Stem Cell Research
      Alopecia Areata Registry
   Appropriating funds “pays for” each program
   Challenge: NIH Funding is decreasing
                      Communicating with Congressional
                             Leaders & Staff

       Most Effective Forms of Communication
1.   Spontaneous letters from constituents
2.   Office visits by constituents
3.   Articles in local newspapers
4.   Telephone calls from district opinion leaders
5.   Congressional Research Service
6.   Telephone calls from constituent
25. Office Visits from Lobbyists
Source: Nonprofit Lobbying Guide
           Attributes of a Good Advocate

   Constituent (you) – from the Member’s district

   Credibility – your family is directly affected by
    alopecia areata

   Common Sense – making reasonable requests

   Comfortable shoes, breath mints,
    patience, and a sense of humor
        Typical Congressional Office

   Chaotic, quick-paced atmosphere

   Smart, young staff

   Meetings in foyer, hallways, cafeterias

   Ever-changing schedules
           A Typical Legislative Meeting
        Arrive early, with message coordinated and rehearsed
      Introductions – emphasize your relation to the district
      Real life examples such as your family
      Stay on message
      End with an “ask”
          Increase in NIH Funding
          Ask Members of the House of Representatives to sign onto
            Dear Colleague Letter to Dr. Katz of NIAMS asking him to
            develop a plan that results in greater awareness and use of the
            National Alopecia Areata Registry by scientific investigators
      Debrief; Write “thank you” letter & repeat request
      Check with NAAF to see if your Member of Congress has signed on,
       and if not, please contact the office and remind them of your visit.
Role Play!!!

   Be yourself
   Treat the Member and staff as you expect
    them to treat you
   Be brief, concise and clear
   Provide written material
   Thank the person for their time
   Send a thank you letter
   Leave without making a request
   Blame legislators for everything wrong with
   Talk about non-related issues
   Ramble or take more time than needed
   Be offended if they forget your name
   Forget to follow up
   Show up without an appointment
   Fail to keep your scheduled appointment
                 Tips for Advocates
   Keep it local.
       “All politics is local.” (Tip O’Neill)
   Keep it personal.
       Make your family’s quality of life the issue
   Keep it concise.
       “Brevity is the soul of wit.” (Shakespeare)
        5 minute rule!
       Use your talking points
   Keep it written.
       Give them the “Leave-behind handout” at end of
                 What Next?

   Return your contact sheets to NAAF!!
   Check with NAAF to see if your House
    Member signed onto the Letter to Dr. Katz
   Make follow-up calls; write “thank you’s”
   Make and maintain personal contacts
   Send NAAF any follow up correspondence
    between you and your legislator
   Stay informed and engaged

   Relax. Be yourself.
   Tell your story. Make your request.
   If needed, refer to talking points for focus.
   Send a thank you letter with a request
    reminder to those you met with.
   Stay involved as a continual advocate.
   It may take a multiple calls or letters, but
    stay in touch with staff.
         How do I get to Capitol Hill?

   Charter Buses or Taxis
   Colored Cards
   Ulysses S. Grant Memorial between Constitution and
    Independence on 1st Street
   Senate: North towards Constitution
   House: South towards Independence
   Lost? Ask!
         Where do I eat? I’m hungry!

   Basement of the Rayburn and Longworth Buildings on
    the House Side
   Dirksen Senate Building
   Smithsonian cafeterias
   Library of Congress (LOC) Cafeteria, 6th Floor
   Department of Interior
   Supreme Court cafeteria
   Union Station Food Court or Restaurants
   Capitol City Brewery
      How do I get in the building?

 Look for public entrance doors
 Allow time for security screening
          How do I find the office…

   Refer to your confirmation sheet for building
    name and room number
   Look for map and office listings once you are
    inside the building
   Lost? Ask!
   Names are posted on the outside of the
   Look for your state flag!
         How do I get back from Capitol Hill?

   Charter buses will be at the Ulysses S Grant Statue to
    pick you up
   The buses will be departing from the pick up from
    12:30 until 4:00pm
   If you would rather spend more time on the hill, you
    can take a taxi back or use the Metro. Taxi ride will be
    about $10
   If you take the Metro, you will need to get off at the
    Blue Line: Crystal City Metro Stop toward Franconia-
    Springfield or the Yellow Line toward Huntington. You
    might have to transfer to Blue or Yellow Line
          Contact Information

   Lisa Butler: 415-269-1697

   Vicki Kalabokes: 415-971-6944

   Hetaf Kraydi: 202-549-1010

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