Public Awareness and Media

Nine 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. By reaching the masses, individuals that have never heard about HHT become 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. The HHT Foundation is extremely grateful to all the individuals responsible for building public awareness of HHT.

Press and Media Toolkits

• Publicity Primer
• Pertinent Information for HHT Awareness
• How to write a media release
• Sample - Press Release
• Sample - Call Script
• Sample - Letter to the Editor
• Article - 2007 Pacific Palisades (Nunez)
• Article - 2008 Modern Babies and Children (Palmer)
• Article - 2011 Salt Lake Tribune (HHT Center)

HHT in the Headlines

HHT: A "Mom Prom" Charity

St. Thomas a'Becket Catholic Church in Canton Township, Michigan hosted its' 6th Mom Prom on February 25, 2011 to raise money for the Society of St. Vincent de Paul and the HHT Foundation International. Jody Nissan, organizer of the HHT grassroots fundraising campaign Our Hope Holds The Cure, along with her team captains, family, and friends, participated in this event and promoted awareness of HHT through media interviews. The event was put on the Associated Press wire, it went viral on YouTube and was picked up as a story of interest by several national newspapers and television shows. Click on the links below to read stories or watch videos related to this story.

Good Morning America - live story about the "Mom Prom" aired on March 10, 2011. The written story can be read on the GMA website.

NPR - "Detroit-Area Mom Prom Idea Starting to Spread" was written by the Associated Press on March 1, 2011. Jody Nissan and HHT are mentioned in the article.

Patch.com - "Canton Mom Prom Garners International Attention" article describes the event and HHT.

YouTube Video - What is "Mom Prom"? Watch the YouTube video to see what Canton, Michigan women will do for charity. Even though HHT is not mentioned specifically in this video clip, it is one of two charities receiving donations from this event.

ABC's Good Morning America Weekly Highlights - Week of March 7-11, 2011

CBS Early Morning Show - May 10, 2011

Newspapers:

The Salt Lake Tribune
"Little-known but common genetic disease spurs Utahn to action"
By Kirsten Stewart
Published: 09/19/11
Click HERE to link to the article

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

Glen Ridge Voice

Whatever It Takes!, 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:

UCLA Health System created a video featuring Cheyann Cooper's story and the HHT Center at UCLA. HHT Patient Story

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:

"Catching HHT Early Could Save Your Life" aired on KABC Channel 7 News on November 26, 2010 in Los Angeles as they follow the Cooper's through a visit at the UCLA HHT Center with Dr. Justin McWilliams, Co-Director.

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
 

Radio:

92.1 KKDV Radio, Diablo Valley's Hometown Station, is featuring an interview with Angela Carlisle-Brown the week of March 21st. Click on "My Hometown" on the left tool bar to hear her interview  everyday at 7:30am, 1:48pm, 4:30pm, and 7:50pm (pacific time).

Angela is an HHT Board Member with a husband and two children who have HHT. In an effort to raise awareness and funding for the HHT Foundation, Angela is promoting the disease and a grassroots fundraising event over the radio air waves.

Magazines:

UCLA Today - online staff and faculty newspaper published a story on the Cooper family on November 22, 2010

Outlook - Washington University

"Your Child's Bloody Nose"
Modern Babies and Children Magazine, Baltimore Edition, May Issue
Modern Babies and Children Magazine 2006UTHealth May 2006 Article