Action Alert
Help Keep PKD in the Defense Department’s
Peer-Reviewed Medical Research Program

 

Call to Action:

The PKD Foundation needs you to contact your Senators and Representatives to ensure PKD remains in the Defense Department’s (DoD) Peer-Reviewed Medical Research Program for Fiscal Year (FY) 2008. Doing so will allow PKD researchers to apply for grants from a multi-million dollar source of federal funding.

Overview

In FY 2006, the DoD Peer-Reviewed Medical Research Program funded $50 million for disease specific research focused on conditions like cancer, asthma, diabetes, osteoporosis and several other illnesses. For the first time that year, PKD was included as a research candidate.

The PKD research community responded by submitting 28 research proposals to this prestigious program. While the DoD has yet to publicly announce which proposals were funded, the PKD Foundation and its members must again ask Congress to support the inclusion of PKD in this prestigious program for FY 2008, which starts Oct. 1 of this year.

Why should the Defense Department worry about PKD? Thousands of active duty military and civilian personnel may have the disease, based on a 1 and 500 prevalence rate of PKD. Most individuals enter military service in their teens or early 20s. The military will not realize the full service potential of these individuals before the full effects of PKD are apparent and they develop End Stage Renal Disease (ESRD or kidney failure), which will lead to costly transplants or dialysis.

To cure PKD would result in billions of dollars in savings to the military, Medicare, Medicaid and the Veterans Administration for dialysis, transplantation and related treatments.

The PKD Foundation must show Congress each fiscal year that finding a cure for PKD would benefit military readiness and save money for the health care system. Incredible scientific progress has been made in PKD research over the past 12 years, a significant part of it because of research funding from the federal government. Funding from the Peer-Reviewed Medical Research Program represents another opportunity to move us closer to a cure for PKD.

Requested Action:

While PKD was included in the Peer-Reviewed Medical Research Program for FY 2006, there are no guarantees about FY 2008. The PKD Foundation is working hard to ensure that this source of federal research funding remains open to PKD research. Help us keep this funding source available for future research efforts.

If you live in a state of congressional district of a Senator or Representative on one of the Appropriations Committees, the PKD Foundation needs you to send a message supporting the continued inclusion of PKD in the “Appropriations Report Language for FY 2008 under the Peer-Reviewed Medical Research Program.”

If you live in a state or congressional district of an elected official not on one of the Appropriations Committees, we need you to send a message asking your Senators and Representative to call on the Senate or House Appropriations Committees to support the continued inclusion of PKD in the Peer-Reviewed Medical Research Program.

Here’s what to do:

1. Click on the links below to find out which Senators and Representatives are on the Appropriations Committees:

Senate Appropriations Committee contact lis (XLS)
House Appropriations Committee contact list (XLS)

Don’t know which elected officials represent you? Click here for the web site maintained by Congress.org. You’ll need your zip code and street address to identify your Senators and Representative.

2. If you do not live in a state or congressional district of an elected official on one of the Appropriations Committees, use the lists below to find your Senators and Representative:

Complete U.S. Senate contact list (XLS)
Complete U.S. House contact list (XLS)

3. Use the contact information provided from the links above to contact your particular Senators and Representative. You can fax a letter, make a phone call, or send an e-mail to your elected officials:

Use this letter if your Senator is on the Appropriations Committee (DOC)
Use this letter if your Representative is on the Appropriations Committee (DOC)

Use this letter if your Senator is NOT on the Appropriations Committe (DOC)
Use this letter if your Representative is NOT on the Appropriations Committee (DOC)

Four points to remember:

-- Use the helpful tips section of the PKD Foundation web site for guidelines on calling, writing a letter or sending e-mail to your elected officials.

-- Most Representatives will only accept and respond to messages left from constituents who actually live in their districts. Most Senators will only respond to residents residing in the states they represent. We appreciate your efforts to make your voice heard about PKD issues. Your efforts will be most effective when you contact those elected officials that actually represent you.

--The sample letters are provided as a guide. Use them as is, or feel free to use your own personal story (just make certain you include the specific request). Your personal story adds a human dimension to the suffering caused by PKD and will have an impact!

--If you must send a letter by regular mail, DO NOT send it to the elected official’s Washington, D.C., office. Security procedures implemented since 9/11 prevent the timely delivery of regular mail. Instead, mail your letter to your elected official’s state or district office. Addresses for these offices can by found on the Congress.org web site.

Join the PKD Foundation Action Alerts team!

Action Alerts are used when important legislative or regulatory issues affecting PKD come before Congress. We will send an e-mail notice describing the issue and how it relates to you and others affected by PKD. Action Alerts will include sample letters and other ways to contact your elected officials in Washington. You will be contacted only when issues arise that need your attention. To become part of our advocacy team, click here.