HHT ... Read All About It

HHT Foundation International, Inc.

2013 Volume 1

Greetings!

While HHT may not be on your mind every day, it is on ours. At the HHT Foudation office we work hard, on your behalf, to educate, advocate, and eventually terminate this disease.

This year, the HHT Foundation will continue programs that benefit the individuals who know they have HHT and are actively involved in managing the disease. However, this year we also plan to institute an awareness campaign that begins to identify the 90% of HHT patients who don't know they have the disease since these people are at the greatest risk of experiencing a tragedy!

As you read this edition of the Direct Connection, consider the HHT Foundation's role in:

the addition of another new HHT Center
the expansion of an HHT Global Research and Medical Advisory Board
the hosting of an international scientific conference and a regional patient conference
the HHT legislative initiatives - writing of a Congressional Bill and constant pursuit for federal funding
the partnership with the CDC and NIH
the funding of 13 HHT specific research grants leading to scientific breakthroughs

The HHT Foundation provides patients, physicians and scientists is the primary source of educational resources and funding necessary to advance HHT treatment and research. Please remember this when you consider making your next charitable contribution.

Sincerely,

Marianne S. Clancy

Executive Director

READ the Direct Connection

We are thrilled to present the latest electronic issue of the Direct Connection. We have provided an excerpt of some key articles to ignite your desire to read the full edition .

It is our hope that you will share this information with your physicians and family members. The Direct Connection and the monthly electronic News Bulletin are member only benefits. We appreciate your membership and commitment to the HHT Foundation.

Click Here to make a donation or renew your membership today!

AWARENESS The Missing Piece of the Puzzle

by Nicole Schaefer, Director of Operations

HHT Foundation International

There are many pieces to the HHT Puzzle but WITHOUT AWARENESS OF THIS DISEASE:

We may be missing scientists outside of our community who have the key to a genetic cure;
We may be missing educational opportunities through social media, school systems and medical associations;
We may be missing opportunities to treat more patients with health care professionals knowledgeable in HHT;
We may be missing critical funding needed to advance our strategic initiative that will impact the quality of life for people aroung the world;
We may be missing the chance to save a life!

Cover Story.

CLEVELAND CLINIC

NAMED 15TH U.S.
HHT CENTER OF EXCELLENCE

Joseph Parambil, MD

The Cleveland Clinic is a multi-specialty academic medical center with a proud tradition of excellence in medical care, education, and research. The founders established the Clinic with the vision: "Better care of the sick, investigation of their problems, and further education of those who serve." Now, Dr. Joseph Parambil, Director of the Cleveland Clinic's HHT Center, has organized a team of specialties and sub-specialities, with access to ENT doctors, interventional radiologists, gastroenterologists with interests in advanced endoscopic procedures, and medical geneticists that provide comprehensive diagnosis and treatment for HHT patients.

Full Story on page 5.

WHAT ABOUT THE CHILDREN?

by Marianne Clancy

Executive Director, HHT Foundation International

HHT Awareness and Education are more important than ever! Since May 2012, our office has received notification of the loss of 5 children due to HHT: some undiagnosed, others were not screened as "nosebleeds were not really severe in our family", and a few unfortunately experienced an unpredictable event. In addition to these children, there are many that have suffered an event or disability due to HHT.

Full Story and Powerful messages from the heartbroken mothers on pages 6-7.

OTHER ARTICLES INCLUDE...

Screening Children From an HHT Family
Behind the Scenes at the HHT Scientific Conference
Using Natural Health Products Safely in HHT
Nosebleeds Results from the 2012 Imperial HHT Survey
Why Should I Participate in HHT Research?
In Vivo Cell Biology Approach to Defeining the Natural History of HHT - Associated AVMs A Final Report
Our Story - It's Not Just a Family Nosebleed: The Power of HHT Awareness
HHT Regional Patient & Family Conference - Chapel Hill, NC
National HHT Walk For A Cure
"A Night of Hope" Fundraiser
4th Annual Stoner Open Golf Tournament
Status of HHT Diagnosis and Treatment Act
HHT on Doctor's Radio
June 2013 is HHT Awareness Month
Donations to the Foundation

To read these articles, click HERE .

Thank you for choosing to receive your newsletter electronically. Your decision not only saves the HHT Foundation money, but it allows you to receive your newsletter weeks before members who have a hard copy mailed to their home.

For the latest information and events, visit our website at www.hht.org.

Sincerely,