PR for Non-Profits:Raising Awareness on a Budget

Three Case Histories to Illustrate What Some NORD Member Organizations Are Doing

Pulmonary Hypertension Associationwww.phassociation.org

National Foundation for Ectodermal Dysplasiaswww.nfed.org

Moebius Syndrome Foundationwww.ciaccess.com/moebius/

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 couldn’t answer.

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 couldn’t answer.

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 daughter’s birthday.

Lionel Learns What Matters Most

NFED Created a Children’s Storybook:

Lionel the lion experiences the physical and emotional challenges that a child with ED has. He learns it’s what’s 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.

Moebius Syndrome Foundation

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.

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 America…because surgery on a facial nerve isn’t a story but “smile surgery” is.

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).

We’ve 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 school’s

yearbook

“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 college…have it published in our school newspaper…and do a public service announcement on our cable channel.” The writer also offered to display the poster at her community’s annual Disability Awareness Day.

My Personal Favorite Response:

NORD’s online community lets us talk one-on-one.

NORD’s online community:

Was created in partnership with ClinicaHealth, which did a similar project for the NIH Children’s Inn

Was officially launched at NORD’s 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

NORD’s “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.