PR for NonProfits:

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PR for Non-Profits Raising Awareness on a Budget
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Three Case Histories to Illustrate What Some
NORD Member Organizations Are Doing

• Pulmonary Hypertension Association
• www.phassociation.org
• National Foundation for Ectodermal Dysplasias
• www.nfed.org
• Moebius Syndrome Foundation
• www.ciaccess.com/moebius/

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• Each member is asked to make contact with local
  reporters.
• The Association provides educational materials to
  take to the reporters
• The Association created some special materials
  including a CD ROM, because they realized some
  people were afraid reporters would ask questions
  they couldnt answer.

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PHAware Campaign Harnessing the Power of Members
to Target Local Media

• Each member is asked to make contact with local
  reporters.
• The Pulmonary Hypertension Association provides
  educational materials to take to the reporters.
• The Association created some special materials
  including a CD ROM, because some people were
  afraid reporters would ask questions they
  couldnt answer.

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Some Results of PHAware Campaign

• The power of visual images Photo of woman with
  her VW convertible helped enhance local
  recognition.
• The snowball effect Story printed in weekly
  newspaper was later picked up by local daily,
  regional and, ultimately, 60 Minutes. Now local
  reporter checks back from time to time.
• Timing is important One mother got her mayor and
  city council to support awareness week to
  coincide with her daughters birthday.

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Lionel Learns What Matters Most
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NFED Created a Childrens Storybook

• Lionel the lion experiences the physical and
  emotional challenges that a child with ED has. He
  learns its whats on the inside that counts.
• This is a four-color, hard-cover book. Cost of
  the first press run 10,300.
• Members are encouraged to buy copies and donate
  them to local libraries, schools, or pediatric
  dentists offices.
• The book is also a great resource for siblings of
  children affected by ED.

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Moebius Syndrome Foundation
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Moebius Syndrome Foundation You Just Might Win
That Contest or Award!

• Vicki McCarrell, president, won 10,000 for the
  foundation with an article she wrote about
  Moebius syndrome and the first conference.
• The award was given by Ladies Home Journal and
  Maybelline for women who revitalized themselves,
  their communities and others.
• In addition to the award, the magazine did an
  article on the syndrome, leading to the
  foundation being found by people who had not
  previously known about it.

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Moebius Syndrome Foundation Find the Human
Interest Element

• When Chelsey Thomas had surgery to correct
  facial paralysis, it was described as smile
  surgery.
• The story first ran in the Los Angeles Daily
  News, then the LA Times, and then the major TV
  networks.
• There were stories on the Today Show and Good
  Morning Americabecause surgery on a facial nerve
  isnt a story but smile surgery is.

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Other Suggestions From NORD Member Organizations

• Provide an informational packet for members to
  deliver to local medical professionals.
• Send an e-blast to members that they can
  personalize and forward to all their contacts.
• Letters-to-the-editor and op-ed pieces may lead
  to a later news or feature story.
• Be creative in thinking of places to submit
  stories (for example, newsletters of
  organizations for people with similar disorders).
  

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Weve Gotten Requests for our Awareness Poster
From

• Individuals with rare diseases who put it on
  community bulletin boards
• A student at the University of California who
  wanted to display it at a student fashion show
• A staff member at a Family/Child Learning Center
• The office manager at a community clinic
• A teacher who wanted to put it in her schools
  yearbook

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My Personal Favorite Response

• I advice a student club that promotes disability
  awareness at (name) Community College.Quite a
  few members of the club have rare diseases. The
  club would be proud to post one of your posters
  at the collegehave it published in our school
  newspaperand do a public service announcement on
  our cable channel. The writer also offered to
  display the poster at her communitys annual
  Disability Awareness Day.

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NORDs online community lets us talk one-on-one.
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NORDs online community

• Was created in partnership with ClinicaHealth,
  which did a similar project for the NIH
  Childrens Inn
• Was officially launched at NORDs Annual
  Conference in Bethesda last September, following
  a soft launch a few weeks earlier
• Provides opportunities for people with rare
  diseases to network, share information about
  helpful resources, and find others affected by
  the same diseases
• Has turned out to be a very positive experience,
  despite initial concerns

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NORDs Five Commandments for Press Releases

• Keep it short.
• Keep it simple. (Use Fog Index, if necessary.)
• Keep it focused. Create multiple lists for
  targeted distribution (www.newspapers.com).
• Find the golden nugget (Emperor of Ice Cream).
• Let the reader walk in your shoes.

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