Public Awareness and Media
Printer-friendlyNine out of ten people in the HHT population are not yet diagnosed due to widespread lack of knowledge by both medical professionals and the general public as a whole. It is so important to reach the public with information about HHT in order to reach the 90% of the HHT population who are currently at risk.
One of the best ways to reach the masses with information about HHT is through the press and media. You would be amazed at how many calls our office received after the Discovery Health Channel ran their Mystery Diagnosis segment about a family with HHT. By reaching the masses, individuals that had never heard about HHT now were empowered with information that can lead to an accurate diagnosis and access to available treatments that could mean the difference between needless disability and premature death and living a healthy productive life.
HHT has received more press and media attention in the last few years due to the efforts of the HHT Foundation and several individual members working to build public awareness of this disorder.
We all have stories to tell of tragedies and triumphs related to HHT. Sharing these stories with the public will go a long way in building greater awareness of this disorder and ultimately lead to saving lives. To follow are newspaper articles, magazine articles, and local and national television programming.
The HHT Foundation is extremely grateful to all the individuals responsible for building public awareness of HHT.
HHT in the Headlines
Newspapers:
The Oakland Tribune (Bay Area News Group)
"Drug offers hope to family with dangerous condition"
By Lucinda Ryan
Posted: 04/02/2010
http://www.insidebayarea.com/search/ci_14800931?IADID=Search-www.insidebayarea.com-www.insidebayarea.com
The Grand Rapids Press, Michigan
“Genetic disorder HHT still a mystery”
by Paul R. Kopenkoskey
Tuesday October 14, 2008
http://www.mlive.com/grpress/lifestyles/index.ssf/2008/10/genetic_disorder_hht_still_a_m.html
Colfax Record, California
“Meadow Vista woman raises awareness of silent killer”
Written by Gloria Beverage
10/8/2008
http://www.colfaxrecord.com/detail/95228.html
Downtown Gazette, California
“Charities Winners At Long Beach Marathon
By Kelly Garrison
10/8/08
http://www.hht.org/docs/Drysdale_Downtown_Gazette_Oct_08.pdf
The Baltimore Sun, Maryland
“Emotional distance: Running for a cause”
by Mike Klingaman
10/08/08
http://www.hht.org/docs/Williams_Baltimore_Sun_Oct_08.pdf
Whatever it Takes!, Glen Ridge Voice, September 18, 2008.
http//www.hht.org/docs/Belvin_Ridge_Voice_Sept_08.pdf
The Indianapolis Star, Indiana
“Teen lives a story of perseverance
Stroke victim coming home after 3-month recovery”
By Cindy Marshall
Posted: September 3, 2008
http://www.indystar.com/apps/pbcs.dll/article?AID=/20080903/NEWS/80903050
Times Colonist, Michigan
“The nosebleed disease”
Chris Zdeb, Canwest News Service
Published: Thursday, July 24, 2008
http://www.canada.com/victoriatimescolonist/story.html?id=cf68ba6f-3146-439d-9501-f5a1edd31523
The New York Times Health Guide, New York
“Osler-Weber-Rendu Syndrome”
April 10, 2008
http://health.nytimes.com/health/guides/disease/osler-weber-rendu-syndrome/overview.html
"My HHT Story" by Nancy Shermoen, March 2007
my_hht_story_by_nancy_shermoen_march_2007
National Television:
Picked up on many television stations all over the US, this segment about Dr. Davidson's study on Avastin has received a lot of coverage nationally. This particular segment was featured on ABC-7 News Los Angeles, CA on March 4, 2010. Cancer drug may help treat chronic nosebleeds
Discovery Health Mystery Diagnosis, Program on HHT, March 2006
There is a press release you can review by clicking on the link below or if you want to watch the actual segment, simply contact the HHT Foundation office for a DVD copy. In order to cover the production costs and shipping costs, the DVD can be purchased for $10 per DVD.
Press_Release_March_2006_Discovery_Health_Channel.pdf
The Learning Channel, "Diagnosis X", July 2007
Diagnosis X
Fox, House episode, March 2007. Click on link, then go into Research. The HHT segment was shown in episode #316 entitled "Top Secret".
Local Television:
Everything you need to know about HHT with 'Doc' Hanks and Dr. James Gossage, FOX29 On The Air with Heather Ieyoub, April 2010
Heather Ieyoub "On the Air"- April 3, 2010
Nosebleeds May Be More Serious Than You Think, CBS News Utah, April 2006
CBS Utah New Health Publication May 2006 238.97 Kb
Health Alert: Genetic Blood Condition May be Silent Killer, ABC News - Utah April 2006
ABC Utah News Health Alert April 2006
Magazines:
"Your Child's Bloody Nose"
Modern Babies and Children Magazine, Baltimore Edition, May Issue
Modern Babies and Children Magazine
Media Guide
If you want to help raise public awareness about HHT, there are many ways you can accomplish this goal. You can send out a media letter to local editors, publishers, and producers that shares information about this disorder, or share information about an event you are having related to HHT, or share your personal story about HHT and how it has impacted your life.
It is so important to reach the public with information about HHT in order to prevent needless disability and premature death. To help you in your efforts, sample Media Letters are listed that you can customize and a Media Guide Website. Click on the website and enter your zip code. The site provides you with National Media Organizations as well as Local Newspapers, On-Line Services, Magazines, Television Stations and Radio. Click on what interests you and you are provided with the staff, their title and contact information.
http://www.congress.org/congressorg/dbq/media/
MEDIA LETTERS
Helpful Hints:
- Once you have the title of the event, date and location determined contact your local media.
- When sending a media alert letter, always get an employee contact. Write ATTN: enter in their name.
- Personalize all material to the media. Think about what they want to hear . . . a truthful interesting story.
Make sure your letter is concise.
- Contact your local newspapers, television and radio station in multiple ways; email, fax and mail a hard copy of the letter to the appropriate people.
- Always keep copies of the letter for yourself and to send to HHT Foundation after the event is held.
- Please contact HHT Foundations staff if you need additional help.
How to Write a Press Release
News is anything that other people may find interesting. This could consist of having an event, telling a story, creating or participating in any occurrence, supporting, opposing, or even merely observing a trend or activity. The press has a tremendous challenge of coming up with new stories to fill their pages and air slots. Therefore, you become their ally. Your achievements--along with your ability to publicize them properly and work cooperatively with media people--will cause local editors to welcome you with open arms. Not only will you have a very good shot at getting your press release printed, but a reporter might even arrange a more in-depth story.
Top 10 Tips in Writing Press Releases
1. Make sure the information is newsworthy.
2. Tell the audience that the information is intended for them and why they should continue to read it.
3. Start with a brief description of the news, and then distinguish who announced it, and not the other way around.
4. Ask yourself, "How are people going to relate to this and will they be able to connect?"
5. Make sure the first 10 words of your release are effective, as they are the most important.
6. Avoid excessive use of adjectives and fancy language.
7. Deal with the facts.
8. Provide as much Contact information as possible: Individual to Contact, address, phone, fax, email, web site address.
9. Make sure you wait until you have something with enough substance to issue a release.
10. Make it as easy as possible for media representatives to do their jobs.
Press Release Formatting Suggestions:
Use 8 _ x 11 paper.
- Use a minimum of one-inch margins on each side of the page.
- Use a Bold typeface for the headlines to draw attention.
- Capitalize the first letter of all words in the headline (with the exception of: "a", "an", "the", or prepositions such as: "of", "to", or "from"). The combination of upper and lower case makes it easier to read.
Complete the paragraph on one page instead of carrying it over onto the next page.
Use only one side of each sheet of paper.
Use the word "more" between two dashes and center it at the bottom of the page to let reporters know that another page follows.
more
Use three numbers symbols immediately following the last paragraph to indicate the end of the press release:
Sample Press Release
HHT Press Kit
A press kit is not a complete collection but rather a snapshot that accurately and rapidly communicates the mission, goals, and needs of the HHT Foundation and our membership with the strongest materials you can share. Below you will find several items that can be helpful when working with the press and other media personnel.
HHT Fact Sheet
List of Officials Authorized to be Spokespersons
List of Offical Authorized
Sample Newsletter
HHT Summer06 News
Sample Personal Story
Our Story - Abbot Family 107.86 Kb
