| Greetings!
We are thrilled to present the latest issue of Direct Connection from the HHT Foundation. In this issue, you will read about the preliminary results of some exciting research.
We have also highlighted several key articles and provided a complete listing of all articles for your easy reference. We hope that you share this information with your physicians and family members, including important information about our upcoming National Patient & Family Conference which will be held Oct. 26-28th in Orlando, Florida. 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!
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THE CLOCK IS TICKING FOR THE
HHT DIAGNOSIS AND TREATMENT ACT
by Marianne S. Clancy, Executive Director
HHT Foundation International
On June 3, 2011, Representatives Elton Gallegly (R-CA) and Jim Himes (D-CT) introduced in the U.S. House of Representatives H.R. 2123, the "HHT Diagnosis and Treatment Act of 2011" (DATA) and on June 8th, Senator Tim Johnson (D-SD) introduced similar legislation in the U.S. Senate, S.1167. If passed, this act would provide $5 Million per year for 5 years. That's $25 Million allocated by the federal government for HHT Research, administrative support for the HHT treatment centers, healthcare professional education, and an awareness campaign for the general population. All of this would be coordinated between the HHT Foundation International and the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH). But, WE ONLY HAVE UNTIL DECEMBER TO GET THIS BILL PASSED!
Click HERE to read the article.
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 PREGNANCY AND HHT: WHAT YOU NEED TO KNOW
by Marie E. Faughnan, MD, MSc
Director of Toronto HHT Program
St. Michael's Hospital
University of Toronto, Canada
and
Els M. de Gussem, MD, HHT Clinican
Respirology Division, Grace Hospital
University of Manitoba, Canada
Pregnancy, labor and delivery may be a risky time for a woman with HHT, but this doesn't need to be. Most women with HHT can have a normal pregnancy and delivery with no more risk for complications than women in the general population. HHT pregnancies are sometimes considered "high-risk", but this is not necessarily always the case...some women with HHT can benefit from a "high-risk" clinic approach, but others don't really need this. The key is information and consultation with an HHT expert, to help the pregnant woman make the best decisions for herself and her baby.
Click HERE and go to pg. 10 to read the full article.
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SPECIAL AWARENESS MONTH SUPPLEMENT
Click HERE to read about all the exciting events that took place during our June 2012 HHT Awareness Month. .
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OTHER ARTICLES INCLUDE...
- HHT Global Awareness Day
- International Meeting of HHT Patient Associations
- Six Month Progress Report: Natural History of HHT-Associated AVM Development Research
- Preliminary Survey Results: HHT & Common Medical Conditions
- Brain AVM Study - Now recruiting!
- NOSE Study - Now recruiting!
- Dental Community Taking Notice of HHT
- HHT Q & A Corner
- Nobel Prize Winning Scientist Talks About HHT
- Our Story - Safe Harbor, My Story with HHT
- Genetic Testing Options for HHT Families
- HHT Day on Capitol Hill
- HopeCrew Continues Efforts to Raise HHT Awareness in Southeast Michigan
- Upcoming Fundraisers
- Symposium on Nosebleed Management: A Highlight of this Year's National Conference
- HHT Patient & Family Conference
- Educating the Next Generation: National Conference Youth Program
- Remembering Molly Dunne
- Donations to the Foundation
To read these articles, click HERE.
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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.
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Sincerely,
Nicole Schaefer
Director of Operations HHT Foundation International, Inc. |
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