ACTION ALERT: Tell Congress to Support CHD

AA - Futures Act
Action Needed – 

Email your legislators: Co-Sponsor the Congenital Heart Futures Reauthorization Act

 

Email your lawmakers and ask them to co-sponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952.)

  1. Visit your lawmaker’s website where you will find a “contact us” form.  You can find their website at www.house.gov or www.senate.gov.  If you are a veteran advocate, you may have direct contact information from previous activities.
  2. Using the suggested talking points and your own personal information, edit the letter below and paste it into the online form.
  3. Let us know you took action: Tell us on Facebook, send us an email or complete the I did it! form on our website.

Suggested Talking Points:

  • The Congenital Heart Futures Reauthorization Act directs the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to continue vital congenital heart research and data collection activities..
  • The law was introduced November 5th by Senator Dick Durbin (D-IL), Senator Bob Casey (D-PA), Representative Gus Bilirakis (R-FL), Representative Adam Schiff (D-CA)
  • This legislation builds on existing programs by:
    • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
    • Expanding research into CHD. The bill directs the CDC to plan, develop and implement a cohort study that would improve understanding of CHD across the lifespan. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
    • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHD across the lifespan. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

Email template:

Dear Senator/Congressman [Fill in name here],

I am writing to ask you to co-sponsor S.2248/H.R.3952, Congenital Heart Futures Reauthorization Act.This important legislation builds on existing programming which will improve understanding of the most common birth defect across the lifespan.

1 in 100 babies are born with congenital heart disease (CHD), the leading cause of birth defect related infant death.  There is no cure for CHD. Those children who do survive face life-long, costly specialized care.

[Using 4-6 sentences, tell your story here and why research is important to you.]

There are more than 2 million children and adults in the United States living with congenital heart disease. CHD remains a serious public health burden and must be made a priority.

To Sponsor S.2248/H.R.3952, please contact ed_hynes@durbin.senate.gov in Sen. Durbin’s office or kristin.seum@mail.house.gov in Rep. Bilirakis’ office.

If you would like any additional information, please contact Scott Leezer at advocacy@conqueringchd.org.  

Thank you,

[Your Name, Your city/state]

To learn more about the PCHA advocacy program, visit our website.