THANK YOU
This monthly news bulletin is possible through your membership donations.
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16th National Patient & Family Conference DVD
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BIG changes are coming . . .
We are excited to announce that our website, www.hht.org will soon have a NEW look and be easier to navigate. The NEW website will be structured to include information for the newly diagnosed, tools and resources for patients and physicians to assist with the management and treatment of HHT, full updates on HHT research and clinical trials, as well as how individuals can get involved in raising awareness or organizing grassroots events. We expect this to be live within the next two weeks. More details to come!!!
We will soon have a new Learn About HHT Brochure that incorporates diagnosis, screening and treatment protocols from the published HHT Clinical Guidelines, along with new information on iron deficiency and anemia, pregnancy, and the screening of children with HHT. This new brochure was revised by our Medical Director, Scientific Research Director and several HHT specialists and is a wonderful resource to patients and physicians alike with inserts highlighting HHT Treatment Centers, Genetic Testing Labs, Facts at a Glance, and numerous resource organizations and websites.
You will receive an email as soon as the NEW website is live. The revised Learn About HHT brochure will be available for download on the Foundation website.
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SURVEY PARTICIPANTS NEEDED
Dr. Claire Shovlin, Lead Clinician and Director of the HHT Centre at the Imperial College London, is conducting additional HHT research to determine if people with HHT are more or less likely to have certain common medical conditions, than people without HHT.
Some of you will recognize the information sheet from their survey last year. Based on your answers, they have developed supplementary questions for this 2013 survey. If you completed the survey in 2012 and recognize some of the questions, please fill them out again because they are important for understanding the rest of your 2013 answers.
Participant Information Sheet - Learn more about this study
It will take about 10-15 minutes for you to assist Dr. Shovlin with this research about general health issues. Your participation is invaluable and greatly appreciated.
All questionnaires will be treated with the strictest of confidence. Dr. Shovlin's research team will not disclose your personal results to your family doctor, or any third party.
Thank you for your participation in this important HHT research!
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LEGISLATIVE UPDATE
Write your Legislators Now Using Engage Website
 The HHT Foundation invested in a tool called "Engage" last year for the sole purpose of making it quick and easy for our HHT members, along with their friends and family, to send emails to their legislators. The message is already composed for you. You simply enter your name and address into the site. With this information, a pre-written email is sent to your Senators and House Representative. It truly takes 2 minutes of your time.
WRITE YOUR LEGISLATOR NOW
Remember, you don't have to have HHT to advocate for HHT. Send your friends, family, neighbors, associates, etc. this link and ask them to support you by utilizing the Engage site to send their legislators an email as well. The more emails a legislator receives from their constituents, the more likely they are to support HHT legislation.
There are many things you can do in addition to sending an email to your legislators. If you are interested in learning more, please contact Sharon Williams, Manager, Legislative Advocacy at sharon.williams@hht.org.
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MEDIA & AWARENESS UPDATEThank you to long-time HHT Foundation member, Anna Jean Nicholls of Decatur, Illinois for sharing her story during June HHT Awareness Month.
 The article entitled, "Staying Strong", states, "It's not unusual for children to suffer from an occasional nosebleed, but for Anna Jean Nicholls, childhood nosebleeds were an indicator of a genetic blood vessel disorder."
In 1996, Nicholls was formally diagnosed with Hereditary Hemorrhagic Telangiectasia at Barnes Jewish Hospital, and in the 17 years since, it has affected her life, from severe nosebleeds and the need to visit Barnes regularly for preventive treatment, to the daily chores of having to flush out her nose, restrict her diet and take medications and supplements including colostrum and vitamin K, which help her blood to clot.
Click here to read her story in the Decatur Herald & Review.
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Member's Monthly DrawingCongratulations to Linda D. of Connecticut who was chosen as our winner of the June Member's Monthly Drawing.
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