Advocacy

[printfriendly]

Advocacy and Public Policy

The Foundation for Peripheral Neuropathy (FPN) works to support public policies that benefit people with peripheral neuropathy. Advocacy and public policy work are important for advancing research into finding new treatments and, ultimately, cures for peripheral neuropathy. FPN advocates for federal and state legislation as well as regulatory actions that will eventually benefit PN patients. We are working to ensure patients have access to high-quality, affordable, evidence-based care and treatments and also to ensure that more funding is available for PN researchers.

Our Policy Targets

The Foundation works with key stakeholders to help shape legislation and regulations that impact people with peripheral neuropathy. While priority issues vary from year to year, our main focus is advancing research on peripheral neuropathy. We support efforts to increase the federal investment in research at the National Institutes of Health (NIH) and the Department of Defense (DoD), in order to improve the diagnosis, treatment, and management of peripheral neuropathy.

Peripheral Neuropathy Research at DoD

In 2020, Congress for the first time included “peripheral neuropathy” as an eligible condition for study through a $370 million fund administered by the DoD known as the “Peer Reviewed Medical Research Program (PRMRP).” This important breakthrough was a direct result of the nationwide advocacy of the peripheral neuropathy community, led by the Foundation for Peripheral Neuropathy.

In the first year for PN eligibility, the PRMRP received more than 1,000 applications for all eligible conditions. Forty-one focused on PN. Eight of those 41 projects were successful and resulted in more than $8 million in funding. Please click here for a list of the 2021 PRMRP Awarded Projects for peripheral neuropathy.

In 2022, three of 28 applications were awarded funding, totaling more than $4.6 million for PN grants. Please click here for a list of the 2022 PRMRP Awarded Projects for peripheral neuropathy.

In 2023, three applications were awarded funding, totaling more than $3.5 million for PN grants. Please click here for a list of the 2023 PRMRP Awarded Projects for peripheral neuropathy.

For more information about the FY24 PRMRP, for which PN has been renewed once again for a $370 million fund, visit https://ebrap.org/eBRAP/public/ProgramFY.htm?programFYId=583103 and see deadlines listed below.

Please make note of the FY24 award mechanisms and pre-application deadlines:

  • Clinical Trial Award (No direct cost limit): May 13
  • Discovery Award ($275,000 maximum): May 6
  • Impact Award ($2M/$2.6M maximum): May 13
  • Investigator-Initiated Research Award ($1M maximum): May 6
  • Lifestyle and Behavioral Health Interventions Award ($3M maximum): May 13
  • Technology/Therapeutic Development Award ($4M maximum): May 13

Most of the full applications are due May 23, June 6, or August 19, 2024, depending on the grant mechanism.

Learn more about this program, how to apply, and how applications are evaluated from the Electronic Biomedical Research Application Portal (eBRAP): https://ebrap.org/eBRAP/public/ProgramFY.htm?programFYId=583103

Background Information:

PN being renewed for another year will allow our research community to apply for funding from a federal program to which they previously did not have access. The PRMRP is specifically focused on high-risk, high-reward research that will lead to new, tangible outcomes such as new therapeutics and treatments.

Every year, Congress determines the conditions that are eligible for study through the PRMRP by listing them in the Senate version of the annual Defense Appropriations Act. However, conditions are not automatically renewed year-to-year, and advocacy is required every year to ensure that members of Congress remain supportive.

FPN worked closely with senators again in 2024 to ensure that peripheral neuropathy was included in the Defense Appropriations Act for a fourth consecutive year.

To learn more about the importance of maintaining the designation of peripheral neuropathy in the PRMRP, download this fact sheet.

Learn how to contact your own representatives (pdf link opens in new tab), pdf link opens in a new tab. Because of the importance of this research to the veterans’ community, the request to include peripheral neuropathy in the PRMRP has been endorsed by the Vietnam Veterans of America and the Veterans for Common Sense (pdf link opens in new tab).

How Else Can You Get Involved?

Advocacy is speaking out on issues that you care about or offering your opinion and suggestions for how to improve something to the people who are in control. It is important for policymakers to hear directly from you about your experiences. You can take several steps toward advocating for increased research funding for peripheral neuropathy. Contact your senators today and ask them to ensure that peripheral neuropathy is maintained as an eligible condition in the PRMRP. Download a sample letter here, pdf link opens in a new tab.
Advocacy

Advocating for PN Research

FPN Advocates for Peripheral Neuropathy Research Funding Ongoing, the Foundation for Peripheral Neuropathy (FPN) has been working with a consultant to advocate for more federal ...
Read More →
Advocacy

FPN Government Relations Update: May 2020

For most of the past two months, Congress – like most of the country – has been in lockdown and working remotely to respond to ...
Read More →
Advocacy

Call to Action 2020! Help Us Get Your Voice Heard for More Research Funding!

The Foundation for Peripheral Neuropathy is embarking on a new and heightened campaign to make more funding available for research on peripheral neuropathy. For 2020, ...
Read More →
Advocacy

Peripheral Neuropathy Advocacy Update

In March 2019, the Foundation for Peripheral Neuropathy initiated an advocacy program to promote more government spending on peripheral neuropathy research through the DoD’s medical ...
Read More →
Advocacy

Calling All Advocates!

A MESSAGE FROM THE FOUNDATION OF PERIPHERAL NEUROPATHY TO ITS ADVOCATES FOR MORE RESEARCH FUNDING On September 10, the Senate Appropriations Committee will begin marking ...
Read More →
Advocacy

Call to Action! Help Us Get Your Voice Heard for More Research Funding!

Mark Vieth, Senior Vice President at Cavarocchi Ruscio Dennis Associates and the Foundation for Peripheral Neuropathy’s advocacy consultant in Washington, D.C., confirmed that the president ...
Read More →
Advocacy

Update on FPN’s Campaign to Get Peripheral Neuropathy Research in the US Budget

Mark Vieth, Senior Vice President at Cavarocchi Ruscio Dennis Associates and the Foundation for Peripheral Neuropathy’s advocacy consultant in Washington DC, provided an update on ...
Read More →
Advocacy

Add your voice to FPN’s to encourage more government research spending on peripheral neuropathy

Your voice can help increase spending for research on peripheral neuropathy! The Foundation for Peripheral Neuropathy has initiated an advocacy program to promote more government ...
Read More →
Advocacy

FDA and FPN survey patients on chronic pain and treatments

On July 9, 2018, the Federal Drug Administration (FDA) held a public forum focusing on the patient’s perspective on drug development for chronic pain. The ...
Read More →

FPN's Resource Library

The Foundation for Peripheral Neuropathy is the leader in providing resources to patients, caregivers, and physicians.

FPN’s Resource Library contains educational brochures, newsletters, transcripts and videos that cover many topics from treatments to research updates to the numerous causes of peripheral neuropathy.

We hope that you find our Resource Library to be of help to you and your loved ones.