NF on tv this week

[Guest guest]

Please read the attached. A woman with NF1 is being featured on Ripley's Believe it or Not. Perhaps any of you with media contacts can attempt to do a spin off local angle.

If not, just enjoy the show.

There will be a television story about one woman's life with NF on the

Wednesday, July 11 episode of Ripley's Believe It or Not, which airs on the

TBS Superstation <http://alt.superstation.com/ripleys/>. The story will

feature Porter Colley of Massachusetts, who has NF1 and devotes a great deal

of her time to educating young physicians and the public about NF. For the past 15 years, Ms. Colley has spoken to the first year medical

students at Harvard/M.I.T. about what it is like to live with a genetic

disorder like NF. Ms. Colley tells us, "nobody has graduated from

Harvard/M.I.T. medical schools in the past 15 years without knowing

something about NF!" Her work was profiled recently on an ABC "Nightline"

story. The National Neurofibromatosis Foundation just became aware of the Ripley's

story and, therefore, was unable to contribute to the story's content. We do

know that Ripley's profiles individuals who have achieved a great deal

despite challenges in their lives. Whenever a national television program is going to contain a story about NF,

we are presented with a tremendous opportunity in our hometowns to tell more

about NF than can be covered by the program. So, we strongly encourage you

to approach your local television and newspaper media prior to the Ripley's

program to cover more of the NF story. Keep in mind, the media is usually

looking for a family to speak about their experience with NF. If this is of

interest, please call Maynard, public education associate, at

x223 to receive materials to send to your local newspapers.

By: A. Maynard

Barbara lin