THANK YOU
This monthly news bulletin is possible through your membership donations.
|
|
16th National Patient & Family Conference DVD
Order Now
|
|
10th International HHT Scientific Conference
June 12-15, 2013
Cork, Ireland
|
|
|
|
We would like to begin by thanking everyone that organized and/or supported an event during the National HHT Walk Month held this past May. Look for photos and highlights from all of these events in our next issue of Direct Connection.
June is HHT Awareness Month - Did you know that 9 out of 10 people who have HHT are not yet diagnosed? That's over 1.4 million people worldwide who don't know they have HHT and most of them are probably related to someone who does.
What an opportunity to try and find the 90% who are undiagnosed in your family or in the general population. The video, More Than A Nosebleed: HHT, is the perfect tool for educating people, patients and physicians alike, about HHT. You can give the video link ( http:video.hht.org) to anyone who could possibly have HHT or to any physician that might be able to diagnose HHT (family practice, internal medicine, pediatrician, pulmonologist, ENT, etc.). In addition, there are plenty of resources on the HHT Foundation website that you can share with your family and local doctors - HHT Quick Facts for Healthcare Professionals.
We also encourage you to FOLLOW US on Facebook! We will be posting a daily fact about HHT. Please SHARE this on your Facebook wall to help raise awareness!!! Nicole Schaefer
|
|
|
LEGISLATIVE UPDATE
"HHT Capitol Hill Day"
With the introduction of the
"HHT Diagnosis and Treatment Act of 2013"
into the 113th Congress, individuals are coming to our Nation's Capitol to meet with their Senators and House Representatives in order to gain co-sponsors for our bill.
NOW everyone who is affected by HHT can act!
- Join us in Washington D.C on June 6 - 7th (it's not too late - please email Sharon Williams asap if interested)
- Make a District Visit on next recess which is July 1 - July 5th
- When asked, send a prewritten email to your Legislator - it takes two minutes with our new software called "Engage"
- Collect signatures on a Petition
Your participation at this critical juncture is deeply appreciated. We are honored to stand side-by-side with you in the fight against HHT and in advocating for important research dollars that keep research and new treatment options moving full steam ahead.
Sharon Williams
Manager Legislative Advocacy
sharon.williams@hht.org
|
Look what's happening in June ...
The "First Annual National HHT Walk" in Washington DC!
Roy Forey of Washington, DC is organizing a
National HHT Walk on June 9th with the help of several friends and family. The three mile walk will begin at the Washington Monument and continue to the Lincoln Memorial reflecting pool. Currently, we have over 50 people registered to walk and it's not too late to join us. According to Roy, "It is important to highlight HHT in our Nation's Capitol, especially as we advocate for the HHT Diagnosis and Treatment Act in the U.S. Congress."
|
HHT Awareness Blood Drives
 "Doc" Hanks, National HHT Blood Drive Coordinator, has been hard at work organizing over 15 HHT Awareness Blood Drives that will take place in Louisiana and Texas throughout the month of June. Most blood drives have been coordinated with the help of LifeShare Blood Centers and will be publicized on their website, www.lifeshare.org. Doc was also recently interviewed on KETH-TV in Houston and has plans to do several other interviews during the month of June. Please Follow us on Facebook for more information on all the HHT Awareness Blood Drives.
|
2nd Annual Gulf Coast RNA
Kite Fest for HHT
Click here to make a donation to the Kite Fest for HHT.
|
2nd Annual Niagara Falls Lights Up for HHT Awareness
Mark your calendars for the 2nd Annual Niagara Falls Light Up for HHT Awareness on Saturday, June 29th from 9:30-9:45pm and again from 10:30-10:45pm in honor of HHT Awareness Month! If you live near the area, please join Keith Scouten and his family and friends at 8pm to help raise awareness at Prospect Point (American Side). Everyone will be able to participate in the event via live webcam, simply go to www.niagarafallslive.com
Click here to view the Niagara Falls 4 HHT Awareness webpage, set up by Keith Scouten, for the most up-to-date information on this event.
If you are planning an HHT Awareness Event in your area, please let us know so we can post it on our website.
Go to www.hht.org to view a complete list of current events.
|
|
|
MEMBERS MONTHLY DRAWING
Congratulations to Helen P. from Pennsylvania who was chosen as our winner of the May Member's Monthly Drawing.
|
|
|
