THANK YOU
This monthly news bulletin is possible through your membership donations.
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16th National Patient & Family Conference DVD & Program Booklet
Order Now
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As you know, HHT (Hereditary Hemorrhagic Telangiectasia) affects 1 in 5,000 people. However, is is believed that 9 out of 10 people with HHT don't know they have the disease. In the United States, that's over 68,000 people walking around with a genetic condition that could have life-threatening, or at least quality of life altering, manifestations.
Education and awareness are the key to reducing these statistics and increasing the diagnosis of HHT. As you will see in this News Bulletin, we have big plans in the coming months to make a difference and create awareness for HHT.
As you read about these events, please consider how you can make a difference.
Nicole Schaefer
Director of Operations
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SAVE THE DATE
HHT Regional Patient & Family Conference
Saturday, April 27th 9:00am - 5:00pm Chapel Hill, North Carolina 
Look for more information to follow. |
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Roy Forey - New Chairman of the
HHT Legislative Committee
Mr. Roy Forey has recently been appointed as the Chairman of the HHT Legislative Committee. Roy is a current HHT Board of Director, a longtime active member of the Legislative Committee, and has walked miles and miles on the streets of Washington D.C. in order to meet with our Senators and House Representatives to gain their support for HHT Legislation.
Mr. Forey is CEO of Prime Connections, LLC, a consulting firm that specializes in business development in the United States. Before launching Prime Connections, Mr. Forey was Consul Trade for the British Embassy in Washington D.C., where he worked for 23 years. Roy and his wife, Patty, live in Washington D.C. and also have a vacation home in Delaware.
We wish to express our sincere gratitude to Chuck Atkins, whose term is coming to an end, for his leadership of this Committee over
the past few years. Mr. Atkins, who began his service in Congress in 1993, and has served as Chief of Staff for both Rep. Scotty Baesler
of Kentucky and Rep. Bart Gordon of Tennessee, has very kindly agreed to continue to provide his expertise and advice to this committee whenever needed.
Mr. Forey is currently scheduling meetings on Capitol Hill in order to confirm a Senator and House Representative to re- introduce our HHT Diagnosis and Treatment Act to the 113th Congress. |
 Special Events Update
"Incredible!" This is the word that best describes the commitment I've seen from everyone who has contacted me to schedule an event. With a little over 2 months until our National HHT Walk For A Cure month begins in May, I am excited to announce that I am currently working with over 20 families to help coordinate events in communities across the nation. The events vary from community walks, school walks, 5K Run/walks, dance-a-thons, golf outings, as well as a KiteFest. Regardless of what the event is or how small or large it becomes, it's awareness for our HHT families.
At this point we COULD just be content with the events that have been confirmed to date. But that's not my personality, it's not the Foundation's mission and that's not what will bring the awareness and the funds needed to win the battle against HHT. So for those of you who are frustrated with what this disease has done to your family, or those of you who I may have spoken to once about an event and that's where it stopped, call me. Here's my cell - (248) 924-0797. If you prefer, you can email me at joe.wallen@hht.org.
I am here to help. That is my job. Setting up and running an event is A LOT easier than you may think. Our kits have been carefully developed to take you through the process. In order to have an event in May, I need to hear from you by early-mid March at the latest. Keep in mind, if you want to hold an event in a different month, that's fine too. But I would ask you contact me as soon as you can so that we can start planning. Watch for a full listing of events to be posted on the HHT website.
Thank you for your time as always.
Joe Wallen
Manager of Special Events |
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A Night of Hope to Benefit the
HHT Foundation
Jody & Clay Nissan request your presence...
1st Annual Charity Ball & Silent Auction
to benefit the HHT Foundation International
Friday, May 10, 2013 ~ 6:30 p.m. - 12:00 a.m.
The Inn at St. John's Grand Ballroom
Plymouth, Michigan
Strolling dinner and open bar from 6:30p.m. to 9:30 p.m.
Dancing with music provided by metro Detroit's hit band
Persuasion from 9:30 p.m. to 12:00 a.m.
Reservations much be received by April 5, 2013
Formal attire
Click on the image below to view a
special video invitation.
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MEMBERS MONTHLY DRAWING
Congratulations to Lucy H. from North Carolina who was chosen as our winner of the January Member's Monthly Drawing. |
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