Time is Running Out: Support HHT Centers by May 19th

By Valaree Machen | May 6, 2025 |

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!