Mary Dunkle, NORD

  • View

  • Download

Embed Size (px)

Text of Mary Dunkle, NORD

  • 1. PR for Non-Profits: Raising Awareness on a Budget

2. Three Case Histories to Illustrate What SomeNORD Member Organizations Are Doing

  • Pulmonary Hypertension Association
  • National Foundation for Ectodermal Dysplasias
  • Moebius Syndrome Foundation


  • 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.

4. 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.

5. Some Results of PHAware Campaign :

  • The power of visual images: Photo of woman with her VW convertiblehelped 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.

6. 7. Lionel Learns What Matters Most 8. 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.

9. Moebius Syndrome Foundation 10. 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 byLadies Home Journaland 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.

11. 12. Moebius Syndrome Foundation: Find the Human Interest Element

  • When Chelsey Thomas had surgery to correctfacial 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 andGood Morning Americabecause surgery on a facial nerve isnt a story but smile surgery is.

13. 14. 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).

15. 16. 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

17. I advice a student club that promotes dis abilityawareness 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. My Personal Favorite Response: 18. NORDs online community lets us talk one-on-one. 19. 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

20. 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 (
  • Find the golden nugget (Emperor of Ice Cream).
  • Let the reader walk in your shoes.