Volunteers Needed! Join Cure HHT on Capitol Hill
We are calling upon volunteers to Join us in Washington, DC, for HHT Hill Day and be the voice that drives change! Your presence can help make a powerful impact for the HHT community!
Our organization exemplifies the Little Engine That Could, and a large part of that success is derived from the community of HHT patients and families who support our work through their volunteering and activism.
This winter, help us continue and expand federal funding for our Centers by joining our Legislative Action Network in Washington D.C. for two days of lobbying on February 11-12, 2025. This is to help fund, expand, and staff our HHT Center of Excellence program.
This funding is not guaranteed or promised every year. We need your help, YOUR VOICE, to both maintain and grow our center funding!
I know, you are thinking: “I’m not a lobbyist! What do I know about congressional budgets and appropriations?”
The truth is, legislators love to hear from their constituents, and genuinely listen to their concerns and advocacy. Meeting with a representative, senator (or more likely staffer) is one of the most impactful and meaningful things you can do as a constituent. This opportunity is for everyone! No prior experience is required. If you’re passionate about HHT, this is the event for you!
FAQs
What is a Capitol Hill Day?
Capitol Hill Day is a unique opportunity for our community to come together and advocate for increased funding for HHT research and support. We believe that your voice, as a patient, is a powerful tool in influencing legislators to prioritize HHT-related initiatives. We will be organizing several meetings with lawmakers and need HHT patients from all over the country to attend to ensure we have representation from different states and congressional districts.
It should be noted that this is not partisan work. Our goal is to get HHT the attention it deserves, regardless of political party.
Why should you participate?
Your engagement in Capitol Hill Day is one of the most meaningful ways you can contribute to shaping a brighter future for HHT patients. Legislators need to hear your stories, experiences, and challenges to truly understand the impact of HHT on individuals and families. Your voice matters, and this is a chance to make it heard on a larger stage.
Attending will have a generational impact, as the dollars we secure will help HHT patients for years to come. There are several other benefits:
- It’s fun. Yes, fun! Our goal is to make this an extremely memorable experience for those who join!
- Meet and network with fellow HHT patients.
- See our democracy in action! Get an inside look at how advocacy and lawmaking takes place.
- Meet your local lawmakers.
Do I need advocacy experience?
We understand that advocacy might be new to some of you and that’s perfectly okay! No prior experience is needed, as we will be providing training sessions to equip you with the knowledge and tools to effectively communicate your message. We are here to support you every step of the way.
Questions? Email us at [email protected] and we’ll get back to you.