Action Alert
Contact Congress NOW to Keep PKD Research a Priority
for the National Institutes of Health!

 

Call to Action:

Steady declines in federal PKD research funding at the National Institutes of Health (NIH) could place the future of ongoing PKD research and clinical trials in doubt. Your voice must be heard by Congress to ensure PKD receives the federal funding researchers need to find a cure!

Overview:

PKD has been called one of the most promising areas of research in all of biochemistry. In just the past 12 years, scientists have progressed from discovering the genes that cause PKD to launching nine human clinical drug trials - an extremely short time period when conducting biomedical research. The PKD Foundation has been the catalyst behind this progress, accomplished by partnering with the Federal Government, industry and the private sector.

This partnership with Congress and the NIH to find a cure and raise public awareness has worked, until recently, to bring more and more funding for PKD research, which peaked at $37 million in 2003. Unfortunately, over the past three years, that funding level has declined by more than 32 percent to less than $25 million today because of budget reductions and lack of priority setting for disease research at the NIH.

In fact, PKD receives far less in federal research funding per person affected - $42 - than all the other major genetic diseases, which receive funding averaging almost $1,500 per person. While all genetic diseases are serious, the overall decline in NIH research funding hits efforts to cure PKD especially hard because of our already low funding levels. Further declines in federal PKD research funding could place the future of ongoing PKD research and clinical trials in doubt.

Congress, through the House and Senate Appropriations Committees, will be setting its budget priorities for the entire federal government for Fiscal Year (FY) 2008 (which starts on Oct. 1 of this year) in the next few weeks. Decisions will be made soon by your Senators and Representatives on whether PKD is included as a priority for research funding by the NIH.

Requested Action:

Help the PKD Foundation ensure that PKD research remains a priority at NIH and receives the federal funding needed to find a cure.

If you live in a state or congressional district of a Senator or Representative on one of the Appropriations Committees, the PKD Foundation needs you to send a message supporting the inclusion of PKD report language in the “FY 2008 Labor/HHS/Education Appropriations Report for Congressional Committees.”

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 inclusion of PKD in the report language.

What does that mean? You will be asking your Senator or Representative to make sure PKD remains a research priority when the Appropriations Committees decide how much federal funding the NIH receives in FY 2008.

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 list (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 Committee (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.