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We are bringing you this special edition of the e-bulletin because so much is going on at the HHT Foundation. This past week several HHT members traveled to Washington, DC to meet with members of Congress urging their support of the HHT Diagnosis and Treatment Act. This same week, we hosted the 1st Annual Washington DC National HHT Walk to raise awareness in our nation's capitol. Immediately following the walk, our Executive Director, Marianne Clancy, boarded a plane for Ireland to attend the 10th HHT World Scientific Conference. She will be joined by over 250 of the most brilliant minds in HHT who will collaborate over the most promising research and therapies in HHT. We are proud to be a supporting sponsor. In addition, many members of the HHT community are stepping up to raise awareness by coordinating blood drives, speaking to press and media, planning special awareness events, as well as sharing information through social media. Please follow us on Facebook and Twitter for the latest information from the HHT Foundation. We encourage you to help raise HHT awareness in your own community. Nicole Schaefer |
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HHT Capitol Hill Day
 | Art Gutkowski, Senator Barbara Boxer (CA), Angela Carlisle-Brown, HHT Board of Director and Roy Forey, HHT Board of Director and Chairman of HHT Legislative Committee
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On June 6th & 7th, several HHT members from across the country came to Capitol Hill to meet with members of Congress to ask for their support of the HHT Diagnosis and Treatment Act of 2013. Over 40 appointments were held resulting in 8 legislators that agreed to co-sponsor, 31 legislators that are likely but they first have to hear from more of their constituents, and only 3 that are unlikely to co-sponsor.
Angela Carlisle-Brown traveled from Concord, California to meet with Senator Barbara Boxer. As result of their meeting, Senator Boxer has now signed on to co-sponsor the bill.
The HHT Foundation would also like to thank Jody Nissan, Susan Nichols, Angela Schram, Art Gutowski, Amy VanBrussel, Shannon Loverich and Sabrina Norris, all members of the HopeCrew who traveled from Michigan to meet with their legislators.
A special thanks to John and Ruth McMahon for their dedication to this cause. This is the McMahon's 6th Capitol Hill Day Event.
Please take 2 minutes of your time to send this pre-written email to your Senators by clicking onto this link. They need to hear from their constituents directly. Write Your Senator Now
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Washington, DC National HHT Walk
 The HHT Foundation would like to thank everyone that came to Washington, D.C. this past weekend to participate in our the First Ever - Washington, DC National HHT Walk. We exceeded all our goals with over 60 participants and raised over $5,000 in donations. We had participants representing the states of California, Washington, South Dakota, Michigan, New York, Maryland, Virginia, and Delaware all marching from the Washington Monument to the Lincoln Memorial Reflecting Pool in their red HHT shirts carrying banners and handing out literature. Hundreds of people saw the group as they walked to raise HHT awareness. |
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 Top HHT Minds Meeting in Ireland
As you read this, over 250 scientists, clinicians and patient advocates are now meeting in Cork, Ireland to discuss current research and knowledge in HHT. Over 16 countries are represented during this 3-day international conference. Attendees will participate in 12 different sessions, view 92 abstracts and 150 posters.  | | 10th HHT Scientific and Patients Conference 2013. Cork, Ireland. |
Notable speakers include, Alan E. Guttmacher, M.D., Ph.D., Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development in Bethesda, MD. According to Dr. Guttmacher, "We are arguably entering a new era in scientific research. The availability of novel research tools, such as the human genome sequence and inexpensive genome sequencing have the potential not only to provide new insights in to the fundamental biology of many conditions, but, literally, to redefine health and disease." The HHT Foundation would like to thank Mike Nolan, Founder of the Grace Nolan Foundation, for bringing this conference to Cork. In 1999, he lost his nine-year-old daughter, Grace to a lung AVM. Grace had been coughing up blood and had 9 hospitalizations between March and November 1999 before she passed away. At each hospital visit, the doctors missed the diagnosis. Mike started piecing together memories of his childhood, recalling family members who had suffered nosebleeds and other bleeding problems. Through his research he discovered the HHT Foundation. Through extensive emails with the Foundation, he was able to get an appointment for Grace at the HHT Center at Hammersmith Hospital in London. Tragically, Grace died two weeks before that appointment. Mike and his wife, June have dedicated their lives to educating the doctors in Ireland about HHT and established the Grace Nolan Foundation. You can read more about Mike Nolan and the Grace Nolan Foundation in the Irish Examiner. Click here to read this article. |
MARK YOUR CALENDARS
HHT Global Awareness Day is celebrated each year on June 23rd. Mike Nolan selected this day to honor the birthday of his daughter, Grace Nolan. We hope that YOU will mark your calendars and educate others on this day by sharing our awareness video entitled, More than a Nosebleed: HHT. Go to http://video.hht.org
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