Legislative Action Alert

On the heels of our very successful Advocacy Day, comes this Alert. Please take action before end of day on Friday, March 20

Request that House and Senate Members sign on to letters supporting FSGS research

Members of the House and Senate have drafted letters urging their colleagues in Congress to support medical research on focal segmental glomerulosclerosis (FSGS) and nephrotic syndrome (NS) through the National Institutes of Health and the Department of Defense.

Contact your two Senators and your House Representative to ask them to sign on to the letters. If a large number of Members of Congress express support for research on FSGS/NS, federal agencies will respond by continuing to prioritize their FSGS/NS research portfolios.

To determine your two Senators: Visit www.senate.gov, and select your state in the drop-down menu on the top-right corner of the webpage. Click ‘go.’ Your two Senate offices will appear with their DC office phone numbers and webpages.

To determine your House Representative: Visit www.house.gov, and enter your zip code in the box on the top-right corner of the webpage. Click ‘go’ and a link to the webpage of your House office will appear. You may need to enter your full address if more than one Representative is listed.

Action: 

1. Call your two Senate offices and your Representative’s office.
2. Tell the person that answers the phone that you are a constituent.
3. Ask to speak with the health staffer and deliver the message below. If you can’t reach the health staffer, it is OK if you deliver the message to someone else or to a voicemail.
4. Ask if you can send a follow-up email and request an email address.
5. Send a follow-up email based on the message below.

Recommended Message – [brackets] indicate where to insert specific information:

• “I am a resident of [CITY]. [Cite any meetings you may have had with the office.]
• I am contacting you to request that your office sign on to a letter supporting research on FSGS. The closing date is March 23^rd.

[In the Senate: “The letter is led by Alex Graf in Senator Stabenow’s office”] or [In the House: “The bipartisan letter is led by Dante Cutrona in Rep. Costello’s (R-PA-6) office and Joel Richard in Rep. Deutch’s (D-FL-21) office.”]

• FSGS and the diseases that cause nephrotic syndrome are devastating kidney diseases. FSGS is a leading primary glomerular cause of end-stage renal disease.
• [Briefly tell your story as a patient, parent, caregiver, etc.]
• I hope you will sign on to the letter supporting FSGS research before March 23^rd.
• Please keep my posted on the actions you take. You can reach me at [phone and/or email].”

Thank you! Feel free to forward this information to friends and family members as well. Every call helps!