January News Bulletin

HHT Foundation International

Monthly News Bulletin

January 2013

In This Issue

RFP for Database Development

Conference DVD Now Available

National HHT Walk For A CURE

Upcomg RNA Meetings

Member's Monthly Drawing

THANK YOU

This monthly news bulletin is possible through your membership donations.

HHT Foundation Website

HHT Awareness Bracelets

HHT MedicTags

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HHT Treatment Centers of Excellence

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While December is a time of reflection, January is a time to make resolutions and set goals for the new year. The HHT Foundation Board of Directors and staff are no exception.

Here are just a few goals we have set for the New Year:

Add two new HHT Centers of Excellence in North America
Host a Regional Patient Conference in Chapel Hill, NC (Spring 2013)
Raise $2 million by June 30th to ensure funding for strategic initiatives developed by HHT Board of Directors
Develop a North American Patient Registry Database
Host National HHT Walk For a Cure Fundraiser
Streamline and Makeover HHT Website

These goals are only attainable with your help. Please consider how HHT has impacted your life and give generously.

Click here to support the Strategic Initiatives Campaign.

Sincerely,

Nicole Schaefer

Director of Operations

RFP for Development of North American HHT Database

The HHT Foundation International is soliciting proposals for the development and management of a custom relational database for the purpose of studying natural history and outcomes in people with HHT from all over North America.

Letters of Intent are due by January 31, 2013 and should include a one-page proposal, including details of relevant experience of the applicants, as well as a one-page budget. All letters of intents should be forward to nicole.schaefer@hht.org.

Click here to view the full RFP.

Please forward this email to any investigator for whom this RFP may be of interest.

16th National Patient & Family Conference

Now Available

on DVD

The 16th National Patient & Family Conference DVD is now available through our online store. This 3-Disc DVD Collection is filled with important information you will not want to miss. Learn the most current information on HHT research, diagnosis, management and treatment. Conference Program Books are included with purchase. This 200+ page program booklet includes speaker profiles, a Directory of North American HHT Treatment Centers, as well as the slide presentations from the general lectures.

Take advantage of this wonderful opportunity to educate yourself and others about HHT. If you have additional questions, feel free to contact the HHT Foundation at 800-448-6389.

National "HHT Walk For A CURE" Set for May 2013

We can find a cure for HHT but we need your local help to make it happen! The HHT Foundation is looking for families that would be willing to organize a "National HHT Walk For a Cure" event in their community. The walks can take place at your child's school or any type of community setting. We will provide you with an easy-to-follow set of instructions for planning this event, as well as promotional materials.

Our goal this year is simple - Raise $150,000 by hosting 30 walks across the country that raise $5,000 each. This is very attainable if each walk-a-thon recruits 100 participants who raise a minimum of $50.00. Every walker receives a bracelet and those that raise $50.00 receive a walk-a-thon t-shirt. For school walks, we will help set-up incentive prizes for students to reach their goal.

If you have ever wanted to help, the time is NOW! Contact Joe Wallen, HHT Manager of Special Events to find out how you can get started. He may be reached at joe.wallen@hht.org or call 248-924-0707 to speak with him directly.

Upcoming Regional Networking Alliance (RNA) Meetings

Living with a rare disorder can be isolating and frightening. Whether you are newly diagnosed with HHT or have been living with the disorder for years, you don't have to face this illness alone. The following RNA groups will be meeting soon.

The Phoenix Area RNA Group will be meeting on Sunday, January 13th from 1-3pm in Tempe, AZ. Anyone with HHT is invited to attend. Family, friends and caregivers welcome. For more information and to RSVP, contact Pat Jedlicka at gjedlicka@aol.com.

The Milwaukee Area RNA Group will be meeting on Tuesday, January 15th at 6pm at the Wisconsin Athletic Club (WAC) in Community Conference Room 2. The guest speaker will be

Dr. Eric Honenwalter, Vascular & Interventional Radiology Associate Professor from the Medical College of Wisconsin.

Dr. Honewalter will be available to answer questions and speak to HHT treatment options. Anyone with HHT is invited to attend. Family, friends and caregivers welcome. For more information and to RSVP, contact Deb Waller at debwaller@wi.rr.com. Please email questions for Dr. Honenwalter to Deb Waller by Jan. 10th.

The New England RNA Group will be meeting on Saturday, February 2nd in the Foxboro/Mansfield area at 10am. There is no cost to attend and brunch will be included. The following speakers will be in attendance: Dr. Robert White, Ms. Katherine Henderson, Dr. Jeffrey Pollack, Dr. Douglas Ross, Dr. Angela Lin, as well as Dennis Routledge, HHT Foundation President. For more information and to RSVP, please contact Bob Resinger at hhtrcne@cox.net or Dennis Ford at dennis@videodzine.com. The meeting will be held at the following location - 15 Berkshire Road, Mansfield MA 02048.

Click here for directions.

MEMBERS MONTHLY DRAWING

Congratulations to Robert and Alice F. from Ohio who was chosen as our winner of the November Member's Monthly Drawing.

Congratulations to Beth M. from Maine who was chosen as our winner of the December Member's Monthly Drawing.