Time is Running Out: Support HHT Centers by May 19th
We are calling upon this mighty community to help support our efforts to protect and expand federal funding for our HHT Center of Excellence program.
We need as many community members as possible to encourage your members of Congress to sign our “Dear Colleague Letter” in support of our HHT Center of Excellence program in the Labor-HHS bill before the May 19 deadline. Our goal is to get 50 signatures on these letters and we need your support to achieve this.
A Dear Colleague letter is a way for members of Congress to show their support for specific funding priorities in the federal budget — the more lawmakers who sign onto our letter regarding HHT funding, the more likely that funding is to be included in the final bill. Currently, we have letters being circulated in the Senate by Sen. Richard Blumental (D-CT) and Valerie Foushee (D-NC) in the House.
You Can Help In One Of Two Ways!
1. Write Your Members of Congress
Linked below, we’ve created a template letter that you can customize. We hope this makes it as easy as possible for you to support our advocacy efforts!
Important: Please send your letters to Cure HHT’s legislative consultant, Mark Veith who will take your letter and transmit it directly to your senator’s office – taking the heavy lifting off your plate.
2. Request a Zoom Meeting
Also below, we’ve provided a templated email to help you reach out to your officials to request a meeting.
As you know, for the first time three years ago we were able to breakthrough and finally unlock federal funding for our U.S. CoEs after more than 15 years of advocacy efforts. Currently, we are able to fund 15 centers –which has resulted in more than a 54% increase in new patients seen at centers. But our goal is to eventually fund them all.
Let’s do what we do best – GET LOUD for HHT!
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We need as much help as possible. I have been diagnosed with HHT for 61 years and I continue to believe.
Please learn about HHT and vote to fund it
Please approve of this funding. My son Lance Pelletier had symptoms for over three years and had to quit his job because he was unable to focus because of the symptoms. One of the many symptoms is frequent nose bleeds. He was seeing many doctors and many rolled their eyes and did not know what the multiple symptoms could be attributed to. Lance kept notes of his symptoms and after over 120 tests he finally knew what test should be administered. it was a genetic and he was told he had HHT. HHT is a hereditary blood disorder. This is the second most hereditary bleeding blood disorder and his two amazing, athletic, intelligent daughters were both diagnosed with HHT. His physician immediately set up surgery in Boston. He had nine blood bleeds on his lungs. Three were surgically repaired. There are no medications to treat this disease as of yet. This disease needs attention. Thank you!
Please continue funding for HHT research
My son was diagnoised with with HHT a few months ago. It took years to finally get a diagnosis. Though many doctors could not diagnosis this blood disorder, through his persistence and his own research he himself found the correct diagnosis and test required and found a doctor who listened and had the genetic test taken. Since it was a genetic blood disorder his two daughters were tested and found to have HHT. More funding is needed for research and treatments. This blood disorder needs more attention.