THANK YOU
This monthly news bulletin is possible through your membership donations.
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16th National Patient & Family Conference DVD
Order Now
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10th International HHT Scientific Conference
June 12-15, 2013
Cork, Ireland
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SAVE THE DATE
HHT CAPITOL DAY
 JUNE 6-7. 2013
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The HHT Foundation is committed to finding a cure while saving lives and improving the quality of life for those impacted by HHT. There are many ways to reach this goal, (ie., research, education, and legislation), but it MUST be done in conjunction with increased awareness of the disease to be truly successful.
Consider supporting one or more of the individuals listed below who are raising awareness and funds for the HHT in their community.
June is HHT Awareness Month. Now is the time to share your HHT story with your local press and media, your Senator and House Representative or the HHT Foundation.
It is critical that we make the general public, our family members, our friends, and our doctors aware of HHT in order to impact the health of HHT patients worldwide. June 23rd is HHT Global Awareness Day - stay tuned for more on activities surrounding this day!
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LEGISLATIVE UPDATE
Join us for
"HHT Capitol Hill Day" June 6-7, 2013
We have just confirmed our Sponsors that will re-introduce the "HHT Diagnosis and Treatment Act of 2013" in the House and Senate!
The HHT Foundation had put out "Save the Date" notifications about Capitol Hill Day. We apologize that we had not sent out specific instructions yet but we had to make sure our HHT bill would be re-introduced. "Sometimes Congress works a little slower than we like."
NOW everyone who is affected by HHT (that can come to Washington, D.C.) needs to descend on Capitol Hill to share your HHT story in an effort to obtain co-sponsors of the newly re-introduced HHT DATA Act.
Are you new to the political process? No worries.
We will be holding an Advocacy Training Session on Thursday, June 6th from 10:00 am - 11:00 am at Phoenix Park Hotel, 520 N. Capitol Street NW, Washington, D.C. 20001, and will provide you with all the information and materials you need to be effective in speaking with your legislators.
You just need to set up your appointment with your legislators on Thursday afternoon or Friday. You can click on the link below to view instructions that will help you in setting up your appointments.
INSTRUCTIONS FOR APPOINTMENT
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.
RSVP by May 27th to:
Sharon Williams
Manager Legislative Advocacy
sharon.williams@hht.org
District Visits
We realize that not everyone can travel to Washington D.C. You can be an advocate for HHT however right in your community by visiting your legislator when they are in their district offices during recess periods. The next recess period is May 27 - May 31 and July 1 - July 5th.
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Check out these exciting events happening across the country ...
The HHT Foundation wishes to thank the many individuals that have stepped up to increase awareness and organize grassroots fundraisers in their hometowns. We hope that you will read about these events and share with your friends and family in these communities.
 The Brown Family of Concord, CA will run the Bay to Breakers Race on May 19th in the San Francisco Bay Area along with an amazing team of family, friends and colleagues. Greg Brown, along with his two children have brain AVMs as result of HHT. According to Angela Carlisle-Brown, "HHT has affected my children in ways that are heartbreaking. I have watched other families bury their children because of complications from HHT and am determined to find a cure before there is another generation born with this disease."
Click here to read more about this event.
 The Martinez Family of Las Vegas, NV have organized a National HHT Walk For a Cure in Sunset Park in Las Vegas, NV on May 25th. Two of these three children have been diagnosed with HHT and suffered catastrophic events as result of ruptured brain AVM's. Their mother, Zina was recently tested and will be undergoing treatment for a PAVM in her lung. "I'm teaching my children that we will fight this daily by creating awareness among our family, friends and doctors. We need to make everyone in our community aware of HHT. We must find a cure for my children and others affected." to learn more about this event.  The HHT Foundation is excited to be participating as a charity partner in the 40th Hospital Hill Run in Kansas City, MO on June 1st. We need runners, walkers and volunteers from all over the Midwest to come to Kansas City and show their support for the HHT Foundation. The Hospital Hill Run is the oldest road race in Kansas City and the second oldest half marathon in the U.S. We would like to thank Dr. Scott Olitsky, Andrea Olitsky, Dr. Jennifer McBride, Susie Sayers, and Steve and Amy Sokol, for spearheading the HHT Team for this event. If you are interested in joining "Team HHT", please contact Amy Sokol at amy.sokol@gmail.com. Click here to learn more about this event.  Roy Forey of Washington, DC is organizing a National HHT Walk in Washington, DC on 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. 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."
Go to www.hht.org to view a complete list of current events.
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BRAIN VASCULAR MALFORMATION
CONSORTIUM PUBLISHED IN PREMIER ISSUE THE JOURNAL OF RARE DISORDERS
 We are so pleased to share another publication resulting from the Brain Vascular Research Consortia. The HHT Foundation is one of three vital advocacy organizations that includes groups of researchers working on 3 disorders affecting the vascular of the brain. Prior to this consortia of collaborators, researchers worked in "silos" with slow progress and little cross-pollination. This research has already produced some very important findings relative to HHT brain AVM's.
The article describes the consortium and its objectives and is the result of a very successful collaborative effort involving several members of our HHT community, including Marianne Clancy MPA, Marie Faughnan, M.D. and Douglas Marchuk, PhD.
The article is published in the first issue of The Journal of Rare Disorders, an Open Access Journal.
According to Beth Plahn, RN, MHA, Past President and Board Member of the HHT Foundation "I would think one of the most significant HHT publications to-date given the National Institute of Health involvement."
Marianne Clancy has stated "the HHT Foundation represents patient interests and is an active participant in this ground breaking study. Our organization is small; however, we believe that greater results and important answers for patients with brain AVM's in HHT will be realized through collaboration and setting priorities in HHT research."
Click here to read the full article.
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POWERFUL VIDEO INSPIRES "A NIGHT OF HOPE" ATTENDEES
The HHT Foundation would like to thank Jody and Clay Nissan, along with the HopeCrew volunteers, for their tireless efforts in conducting multiple events every year, supporting other HHT Foundation members by attending their events, and volunteering their time at the HHT Foundation national patient and family conference.
What started out as one HHT dinner party ended up as the model for grassroots fundraising and awareness. The Nissan's started with a small group of friends willing to help them fight the battle against HHT. Over time, they embraced other HHT families and touched the hearts of many non-HHT families. Now, they have an "army of volunteers" paving the path to a brighter future for everyone affected by this disease.
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MEMBERS MONTHLY DRAWING
Congratulations to Clifford L. from Kentucky who was chosen as our winner of the April Member's Monthly Drawing.
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