Know the Signs, Fight for Victory

You Can Help Increase Federal Research Funding: Take Action Now

Due to sequestration (spending cuts) and flat budgets in recent years, the National Institutes of Health (NIH) have lost nearly 25 percent of their purchasing power. As a result, the scientific research community is missing opportunities to discover innovative treatments and cures for conditions such as Marfan syndrome and related heritable connective tissue disorders.

A group of key senators would like to end the trend of level-funding and put NIH back on a path of stable, predictable funding increases. Lindsey Graham (R-SC) and Richard Durbin (D-IL), the senators in charge of the appropriations committee, have formed an NIH Caucus in the Senate to fight for both immediate and long-term funding increases. The more Senators that join the NIH Caucus, the more support NIH funding will have as Congress works to balance spending priorities each year.

To ensure your senators join the NIH Caucus and work to increase federal medical research funding, please reach out to their offices and ask for their support.

Take Action

  • Identify the contact information for your senator by going to and selecting your state from the drop down list (only reach out to your two senators).
  • Call the Washington, DC, office and ask the receptionist for the Health Legislative Assistant or Health LA (you will likely receive their voicemail).
  • Prepare to leave a brief message that includes your name, where you are from, your interest in this area, and the following statement:

I hope your office will join the new NIH Caucus by contacting Jessica-Phillips Tyson in the office of Senator Lindsey Graham at 4-9162 or Elise Ackley in the office of Senator Richard Durbin at 4-5519 and indicating the Senator’s interest in the opportunity.

You can also include a sentence about why the NIH Caucus is important to you – for example, your connection to Marfan syndrome or a related disorder.


  • Be persistent and follow up a couple times to reach the Health Legislative Assistant.
  • You can ask the receptionist for the Health LA’s e-mail address and craft the above message into a brief e-mail. 
  • If you would like any assistance engaging your Senate office, reaching out, or following up, please e-mail Joe Stewart at, from the Foundation’s lobby firm, Health and Medicine Counsel of Washington.

Please take action before July 4, when the next congressional recess begins. And after you contact your senator, please let us know by emailing Joe Stewart at

Thank you in advance for helping to create a brighter future for everyone living with Marfan syndrome and related disorders.

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The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.

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