The HHT Boston Fun Run & Walk
Let me share my story to FIGHT for a cure...
Most people have never heard of HHT; yet 1.5 million people worldwide (1 in 5,000) have HHT. The biggest problem with this disorder: 9 of 10 people do not know they have it.
My mom was diagnosed with HHT when she was 37. I was 3 years old and for most of my childhood knew little of its affects. However, she is one of the lucky ones because she received life saving treatment. Others do not share that same fate.
I have seen how devastating and frightening HHT can be. It affected my mother: she lost her sister and mother to the disorder. It affects me: I see the obstacles my mom faces on a daily basis with this disorder. As an intern working at the HHT Foundation, I saw first hand just how hard families struggle with HHT. It especially is devastating when families lose their children to something that is preventable if only they received treatment. So I'm here today not only raising money to find a cure, but raising awareness for HHT so that doctors and patients can finally receive the much needed information on how to live and fight HHT.
- HHT is an inherited blood vessel disorder that affects blood vessels in the lungs, brain, liver, nose, skin and gastrointestinal system
- HHT can result in stroke, hemorrhage, and death; 20% of those affected by HHT will become disabled or die prematurely
- HHT is a SILENT KILLER: the only outward sign for the disorder are nosebleeds, where as the other symptoms are internal and oftentimes lead to tragic resultes
The HHT Foundation is the only Foundation that exists to assist families with HHT. The Foundation strives to raise money using grassroots fundraising, like the Boston Walk/Run to find a cure for HHT. They do not receive federal funding. I believe there is a cure for this disorder, and I’m willing to fight for it.
Register to Participate: Whether you like to run or walk, this event is for everyone! Come out on May 4th and join us in the Back Bay Fens Park to raise awareness and hope!
If you are interested in volunteering, please contact me directly at: firstname.lastname@example.org
You can donate and spread the word: Even if you can’t dedicate your Saturday, please help me advocate for HHT! Whether its donations, sharing our video, or visiting our website, YOU can help make a difference!
Please check out this short 5 minute video to learn how HHT affects people and hopefully, you can help! www.video.hht.org
The Run & Walk will be at the Back Bay Fens Park, starting at the Clemente Baseball Diamond. Located in the backyard of Fenway Park, next to Northeastern, the Boston Museum of Fine Arts and Simmons College!
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder that causes abnormalities of blood vessels. Bleeding in the nose, brain, lungs, stomach, intestines and other organs are symptoms of HHT. For more information on HHT please visit www.hht.org.
The HHT Foundation is a 501(c)(3) non-profit organization. Donations are tax deductible as allowed by law. Tax ID: 22-3115041 • PO Box 329, Monkton, MD 21111