FPN’s second annual Neuropathy Advocacy Day 

The Foundation for Peripheral Neuropathy (FPN) held our second annual Neuropathy Advocacy Day on March 11. It was an important day to speak up for the 30 million Americans living with peripheral neuropathy (PN). Together, we asked Congress to support more research and better care for people affected by this condition. 

Goals of Advocacy Day 

On Advocacy Day, we brought together board members, people living with PN, doctors, researchers, and staff to meet with members of Congress from 11 states. In total, we held 34 important meetings. During these meetings, we introduced ourselves and explained what peripheral neuropathy (PN) is. Patient advocates also shared their personal stories and how PN has affected their lives. By putting a face to the disease, we helped lawmakers better understand its impact. After that, we asked Congress to support three important requests related to funding for medical research: 

• Renew the PRMRP designation for peripheral neuropathy in the fiscal year 2027 Defense Appropriations Act. 

• Provide at least $51.3 billion for NIH in fiscal year 2027. 

• Direct NIH to increase and better coordinate PN research across its different institutes. 

These steps would help speed up research and bring us closer to better treatments, and someday, cures. 

Here’s the handout we distributed during our meetings.

What participants are saying about Advocacy Day

“It’s exciting to be here for neuropathy advocacy day to talk with my senators from California to ensure the appropriations bill get the funding necessary to not only support the researchers and all the work they do but to help us find the true cause of this disease and ultimately go beyond just treatments.” 
– Jennie S., member of the FPN Board of Directors 

“I met with three senators and one representative. I’m here to represent the veteran community and every other person suffering from peripheral neuropathy. Hopefully we can get the funds we need to fight this awful disease.” 
-Michael H., PN patient

“There are three takeaways that I came back with from today: 1. The great FPN staff who are very dedicated. I appreciate everything they do. 2. Learning about the process of getting funding for medical research and all that goes into it. 3. The experience of walking around the Capitol building and getting to meet with some of the staff that work with our representatives and senators.” 
-Ron M, PN patient

Why Is PN Research So Challenging? 

PN is not just one disease. There are more than 100 known causes, including diabetes and chemotherapy. Still, about 25% of patients are told their PN is “idiopathic,” which means doctors do not know the cause. 

Because PN has so many causes, treatments can vary. Some treatments do not work well for everyone. This makes research even more important. 

The urgent need for more research funding 

Even though PN affects millions of people, it is greatly under-researched. 

In 2025, the National Institutes of Health (NIH) spent less than $200 million on PN research out of its $48 billion budget. That equals less than $7 per person living with PN. 

Most PN research funding comes from the National Institute of Neurological Disorders and Stroke (NINDS). But because PN is closely linked to other conditions like diabetes and cancer treatment, other NIH institutes should also help fund and coordinate this research. 

There has been some progress. Since 2021, PN has been included as an eligible condition in the Department of Defense’s Peer-Reviewed Medical Research Program (PRMRP). Over the last five years, PRMRP has awarded $19 million in grants for PN research. Still, overall federal funding remains very limited. 

What happens next? 

Later this spring, the House and Senate Appropriations Committees will begin reviewing and debating their spending bills. The House usually starts first. 

When the House approves its version of the Labor-Health and Human Services-Education bill, we will see if it includes language supporting PN research. Later this summer, when the Senate approves its version of the Defense bill, we will learn if the PRMRP designation for PN is renewed. 

Final decisions are usually made at the end of the year. This may take even longer since it is a mid-term election year. 

Why advocacy matters 

At FPN, we are dedicated to improving the lives of people living with PN through research, education, and advocacy. Advocacy Day is a powerful reminder that our voices matter. 

When patients, families, and supporters speak up together, lawmakers listen. And with more research funding and better coordination, we can move closer to a future with better treatments and hope for a cure. 

Thank you to all patients, board members, doctors, and researchers that attended this year’s Neuropathy Advocacy Day!