Advocacy At Home

How to find your legislator: Find your legislator by entering your zip code under "Find Your Representative" here.

How to write to your legislator: The most important thing to do is to keep your letter simple. State your purpose in the first paragraph by asking your legislator to do something specific (e.g. sponsor a bill, vote for or against a specific measure). Use the next two paragraphs to explain why Nephrotic Syndrome and/or FSGS matters to you. The more clearly and passionately you can explain how these diseases affect you and your family, the more likely the official will be to act in your interest. For templates, tips, and tools, click here.

Town Hall meetings are a great way to educate your senate or representative about FSGS and Nephrotic Syndrome, as well as raise awareness within your community. Open to the entire community, a town hall meeting provides constituents with the opportunity to ask questions, voice their concerns, and hear updates from their elected officials.

Step 1: Contact the local district offices of your elected officials to get the dates and times of any upcoming town meetings.

Step 2: Get prepared for the meeting here.

Step 3: Attend the meeting. Upon arrival, check to see what the procedure is; typically there is a sign-up sheet for individuals wanting to ask questions at the meeting. When called on, ask your member of congress if he or she is willing to support research to find the cause, improve treatment, and find a cure for NS and FSGS.

Step 4: Follow up. Persistence is the key to effective advocacy. After the meeting, be sure to send a follow up letter. See templates and tips here.

Step 5: Tell us about it! Let us know what happened during your town hall meeting so we can better work with your legislator to gain support for NS and FSGS related efforts in Congress.