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HHT Foundation Funds First Therapeutic Study on Nosebleeds in HHT
"We have been listening to you and over the last two years, the largest clinical study to date involving several North American HHT Centers of Excellence has been carefully designed," according to Marianne S. Clancy, Executive Director of the HHT Foundation.
The purpose of the NOrth American Study of Epistaxis (NOSE Study) is to carefully examine the efficacy and safety of 3 nasal sprays for patients with HHT related nosebleeds and definitively determine which of these are beneficial. Each of these sprays will approach the problem from a different mechanism of action.
-READ the FULL STORY, page 1 of the NEWSLETTER.
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HHT SCIENTIFIC & RESEARCH UPDATE
The HHT Foundation continues to work collaboratively with the scientific and medical community around the world to advance the diagnosis, treatment, and management of HHT. This newsletter contains articles on:
- New HHT Center at University of North Carolina at Chapel Hill
- Iron Deficiency in HHT
- Screening for HHT
- Genetic Testing for HHT
- Mayo Clinic Now Offering Genetic Testing for HHT
- Medical College of Georgia has New Name
- Brain AVM Study Now Recruiting at 11 Sites
To read these articles, go to pages 5-11 of the NEWSLETTER.
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LEGISLATIVE UPDATE
The HHT Foundation continues to advocate for federal funding for HHT research, treament and early intervention. Read the complete summary from our recent "HHT Capitol Hill Day." This newsletter contains articles on:
- HHT Champions in the House and Senate
- HHT Capitol Hill Day
- Children in Texas play active role in HHT Legislative Strategy
- Volunteers comment on their Capitol Hill experience
- Make Your Voice Heard - New Call to Action
- Letter from Angela Brewster to Senator Kay Bailey Hutchison's Office
- HHT Legislation Summary
To read these articles, go to pages 12-15 of the NEWSLETTER.
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MEMBERS MAKING A DIFFERENCE
OUR STORY - HHT Member, Anita Runck went from being vibrant to an invalid in the course of about 7-10 days. Learn how an infection changed her life forever. To read the full story, click here and go to pg. 16.
MEMBERS MAKING A DIFFERENCE: A Personal Approach -
Read how several members are making a difference through unique giving or awareness campaigns. (pg. 20)
BOOKS BY MEMBERS - We are excited to share that several of our members have been published. Read how they are giving back for HHT. (pg. 18-19)
FUNDRAISING - Mom Prom Draws National Attention for HHT - JuJu Chang from ABC's Good Morning America flew to Canton, Michigan to interview organizers about the event that went viral on YouTube. Thanks to Jody Nissan, the story was also covered by the Associated Press and picked up by many local and national newspapers. To read more about this event and others that have taken place click here and go to pg. 22-23.
Check out all of the UPCOMING FUNDRAISERS (pg. 24)
HHT FOUNDATION TO PRODUCE MARKETING AND AWARENESS VIDEO - The HHT Foundation is working with the advertising group Bernstein-Rein to create a marketing and awareness video. This video will help to increase the overall awareness of HHT among the public, legislators and physicians.
To read more about the HHT Awareness Campaign go to
To make a contribution to the HHT Awareness Campaign, go to
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REGIONAL NETWORK ALLIANCES
WELCOME TO OUR NEWEST RNA COORDINATORS -
Pat Jedlicka - Arizona
Carol Ann Bourgault - Arizona
Janet "Susi" Sayers - Kansas
Diana Purdy - Michigan
Marijo McCune - Ohio
Susan Reid - Minnesota
Dawn Voytko - Tennessee
Angela Brewster - Texas
Russell Haile - Texas
Leigh Lingbloom - Washington
To read their complete bio's and obtain their contact information, go to pg. 27-29 of the NEWSLETTER.
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