As the only organization in the U.S. solely dedicated to finding new treatments and a cure for PKD, we understand how important it is to increase awareness of the disease and showcase its impact on patients, their families, and caregivers. Sharing the PKD message is extremely important for a variety of reasons. Awareness helps people be more understanding and it also highlights why continued funding is important for research initiatives that lead to a better life for everyone impacted by PKD.

Visiting a Congressional Office

The August recess is a great time to share your PKD story and the Foundation’s legislative priorities with your members of Congress. During August, when both the House and Senate are not in session, you can request a meeting with your member of Congress in their district or state office. This is a much easier way to get to meet them and speak with the actual members themselves. Recess time is more low-key and is a perfect time for them to meet with constituents. Remember, they are there to serve their district or state and it is their job to listen to what’s important to you.

Planning your Visit

August recess does not mean Congress is not working — the reality is often the opposite. Most spend this time connecting with local individuals to understand what is happening there and how they can help. That’s why it’s important to plan for a visit.

1. Find your senators and representatives by visiting https://www.usa.gov/elected-officials
2. Contact the office that is most convenient for you to visit
3. Schedule a time, offering at least two dates and times for your meeting
4. Provide your address to help the office confirm you’re a constituent
5. Share if anyone else will be attending with you
6. State what you would like to discuss

Preparing for the Meeting

Even if PKD is a constant in your life, don’t assume others know anything about the disease or its impact. In order to make your meeting impactful, take a moment to familiarize yourself with PKD Foundation’s legislative priorities.

Begin the meeting by asking what they know about PKD and be prepared to spend a couple of minutes talking about the disease and its impacts. Next, prepare your “Ask.” You are there to ask for members of Congress to support legislative issues important to the PKD community. Be focused on why you scheduled the meeting and practice your story so you can deliver it in a timely manner and still leave time for questions.

New materials are always available so check the PKD Foundation website often to stay up to date. You can also bring pictures of your loved one to illustrate your story.

Be courteous of the day’s schedule and end the meeting by asking for a business card from everyone you’ve met. A week or two later, follow-up by phone or email and thank them for their time and restate your “Ask,” providing any additional information about the legislation you discussed. Send a written thank you note and also send PKD Foundation an email at pkdadvocacy@pkdcure.org at let us know how it goes! For additional tips, visit our Advocacy page.

If you’d like to get involved in advocacy with the PKD Foundation, sign up for our advocacy alert emails!