Legislative Advocacy

IMPORTANT LEGISLATIVE ALERT:

Contact Your Senators to Support the Durbin-Blunt Amendment!

The Senate is considering S. 1519, the fiscal year 2018 National Defense Authorization Act (NDAA). Included are Sections 733, 891, 892 and 893, which would prohibit funding for medical research at the Department of Defense (DOD) unless such research meets narrowly defined criteria related to military relevance.

Senators Richard Durbin (D-IL) and Roy Blunt (R-MO) have filed an amendment that would repeal these sections and secure funding for groundbreaking medical research, which is crucial for improving treatment options for HHT. This bipartisan work will ensure that funding for a number of causes will continue, and we need your help.

Protect funding for HHT research by contacting your Senators NOW to support the Durbin-Blunt amendment! 

 

There are three easy ways to contact your Senators: 

1. Call Your Senators:

Find the number to your Senators' office using this link and tell them to support the Durbin-Roy Amendment to S. 1519.

Below is a sample phone script:

I am calling today to urge your support for a bipartisan amendment that will be offered by Senator Richard Durbin (D-IL) to S. 1519, the fiscal year 2018 National Defense Authorization Act (NDAA). This amendment will nullify provisions included in S. 1519 that severely restrict, and in some cases terminate, critical medical research on HHT research funded by the Department of Defense (DoD).

Please share your personal story about HHT if you are comfortable.

 

2. Email Your Senators:

Find your Senators' emails using this link to ask them to support the Durbin-Roy amendment to S. 1519.

Below is a sample email template:

Dear Senator:

I am writing today to urge your support for a bipartisan amendment that will be offered by Senator Richard Durbin (D-IL)  and Senator Roy Blue (R-MO) to S. 1519, the fiscal year 2018 National Defense Authorization Act (NDAA). This amendment will nullify provisions included in S. 1519 that severely restrict, and in some cases terminate, critical medical research on HHT, or Hereditary Hemorrhagic Telangiectasia, funded by the Department of Defense (DoD).

TELL YOUR PERSONAL STORY HERE

Last year, by a bipartisan vote of 66-32, the Senate approved the Durbin amendment to remove similar provisions included in the fiscal year 2017 NDAA. We urge you to once again vote to protect critical medical research by voting YES on the Durbin amendment.

Sincerely,

<<insert your name here>>

 

3. Use Twitter to Contact Your Senators

You may contact your Senators via Twitter by using this link, entering your zip code next to the tab that reads "Find My Reps”, selecting the link next to the senator’s name (@Sen…) and pasting this message:

“As a constituent, I ask you to support DoD congenital heart disease research by backing the Durbin-Blunt FY2018 NDAA Amendment. Thank you!”

 


HHT: A National Health Problem

Hereditary Hemorrhagic Telangiectasia (HHT) is a long neglected national health problem that affects approximately 50,000 to 70,000 Americans or one in 5,000 people. HHT research has so far been funded solely by private contributions, and has never received federal research funding while several less prevalent disorders have received significant amounts of federal research money.

How Can I Act Now?

There are so many different ways to advocate for HHT legislation! Whether you choose to come to Washington D.C. for Capitol Hill Day or advocate for HHT in your home state, we need you to get involved in any way you can. It's time to Act Now!

Email Your Legislator -  It only takes 2 minutes! Let your legislators hear from you through a pre-written email; all you need to do is enter your contact information, write a brief message about how HHT has impacted you, and hit the submit button. It's that easy! Don't forget to ask family, friends and colleagues to get in on the advocacy.

District Visits - This is an ideal year to schedule a visit with your legislator because they will be working from home for extended periods.

Petitions - Gather as many signatures as you can to your Senators and House Representative.

Join our advocacy team by contacting the Cure HHT office at 410-357-9932.

Still not sure how to get started? Break out the Cure HHT Legislative Tool Kit.


From Our Supporters About HHT DATA Act:

“This bill will help fill a gap in care for thousands of patients suffering from HHT and provide patients and physicians with the resources necessary to educate, screen for, treat and better understand this sometimes deadly disease. Continuing to disregard the need for simple screenings and broader education for treatable diseases, like HHT, that could help save lives and reduce costs is unacceptable.” U.S. Senator Tim Johnson from South Dakota

“Expanding research and broadening our understanding of HHT hopefully will lead to treatment breakthroughs that can save lives,” said U.S. Rep. Jim Gerlach. “With greater awareness of HHT, early detection screenings and national HHT research database this bipartisan legislation provides, we also can make significant progress in ending the suffering for those living with HHT and their families.”

“Nine in 10 individuals affected by HHT are unaware that they have it, putting them at risk for sudden internal bleeding, stroke and disability, and even death. The HHT DATA Act, which I was pleased to introduce with Representative Gerlach, will support much-needed federal research and surveillance efforts to improve HHT early diagnosis and treatment.” U.S. Rep. Jim Himes