The ACHAMP Guide to DoItYourself Parent Advocacy

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The ACHAMP Guide to Do-It-Yourself Parent
Advocacy

• How to Stop
• Kvetching and Get Some
• Laws Changed
• by John Gilmore

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OUR SECRET WEAPON

• PARENTS

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All Significant Steps Have been Made by Parents

• Bernard Rimland Autism is biological
• Killed the Refrigerator Mother
• Started Federal Research, ASA, CAN and NAAR
• Identified the current epidemic
• Developed interventions
• Identified role of mercury and vaccines
• Killed Its in the Genes

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Victories!

• Iowa
• California
• New York
• Missouri

• Illinois
• Delaware
• Washington
• Hawaii

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Legislation

• Florida, HB 1111, S 0690
• Kansas, SB 537
• Kentucky, SB 255
• Maryland, HB 394, SB 365
• Massachusetts, HB 3836
• Michigan, SB 720
• Minnesota, SF 639
• Nebraska, LB 569
• Nevada, AB 224
• New Hampshire, HB 562

• New Jersey, S2801,
• A 1324
• Ohio, SB 49
• Oregon, SB 823
• Pennsylvania, SB 391
• Rhode Island, H 5729
• Tennessee, SB 824,
• HB 902
• Utah, HB 1046
• Vermont, H 638

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The Barriers

• No Money
• Hugely powerful opposition
• 6 trillion pharmaceutical industry
• CDC
• Physician trade groups
• American Academy of Pediatrics

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The Barriers

• Perceived as a non-partisan issue
• No full-time lobbyists
• Science-phobia

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Strengths

• We are many and everywhere
• We are not going away
• We have nothing to gain financially
• WE have credibility
• Lawmakers and their staffs are not immune

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Strengths

• FDA, CDC and AAP have squandered their
  credibility
• Vioxx
• Accutane
• Celebrex
• Strattera
• And on and on and on

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Strengths

• Its been done in 7 states
• Our leaders love to lead, as long as they dont
  have to be the first to do anything
• The science supports removing mercury
• Common-sense supports removing mercury

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Strengths

• Organizations
• ACHAMP
• National Autism Association
• SAFEMINDS
• No Mercury
• Generation Rescue
• Moms Against Mercury
• Talking About Curing Autism
• Increasingly, Autism Society of America

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Getting Started

• Educate yourself on the issue
• Find other parents
• Affiliate with an organization
• Create website
• Get business cards and stationery

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Information Packet

• One Pager (Use colored paper)
• Longer report on issue
• Stack of key studies
• These can be provided by ACHAMP, NAANYC and
  others who have done it before

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Find a Sponsor

• Bills need sponsors, usually at least one in both
  houses
• Sometimes party matters, usually want a sponsor
  from the majority party
• Committee may be important
• Illinois and Delaware are best models

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Pitfalls to Avoid

• Avoid the A word
• Nobody can deny that mercury causes neurological
  damage
• Avoid general arguments about vaccine safety
• Being in favor of seat belts doesnt mean you are
  against cars

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Gather Support

• In the community
• Organizations
• Yahoo Groups
• Schafer Autism Report
• ACHAMP Action Alerts

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Gather Support

• Host Events
• David Kirby
• Biomedical treatment of autism

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Gather Support

• In the Legislature
• Send packet to every member
• Door-to-Door in the legislative office building
• Be brief
• Be polite
• Find the appropriate staffer
• You never know who will support us
• Dont make assumptions

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Gather Support

• Make your message personal How much mercury did
  your child get?
• Make an Excel spreadsheet to keep track of
  contacts
• Persist, persist, persist,

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Gather Support

• Mobilize parents
• Office visits, letters, faxes, phone calls,
  emails
• Every person can make a difference
• Some sign-on after one phone call
• Lobbying Day

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Gather Support

• Media
• Write a press release
• Major daily newspapers
• Weekly community papers
• Radio stations, News and talk
• TV stations, broadcast and local cable
• Blogs

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DONT GIVE UP!