The latest in peripheral neuropathy research, from the Foundation for Peripheral Neuropathy
The Foundation for Peripheral Neuropathy is a nonprofit organization whose ultimate goal is to dramatically improve the lives of those living with peripheral neuropathy (weakness, numbness, and pain caused by nerve damage). The Foundation serves as the premier resource for information for patients, families, and healthcare providers. By funding collaborative efforts of leading scientists, The Foundation is raising awareness of this painful and debilitating disorder and taking the necessary steps to accelerate a cure for peripheral neuropathies.
Just in time for Giving Tuesday, we caught up with Lindsay Colbert, Executive Director of the Foundation for Peripheral Neuropathy, for her take on the latest research in this area:
What do you wish people knew about peripheral neuropathy research?
In studying peripheral neuropathy (PN), I have been struck by two figures. The first is that PN is remarkably widespread, affecting an estimated 20 million Americans. The second is that in spite of PN’s prevalence, it has received a fraction of the pharmaceutical research funding of many other neurological conditions. The Foundation aims at minimizing the gap in research funding through its awareness campaigns and programs so that peripheral neuropathy research can receive the attention that it deserves.
In your opinion, what has research contributed to people living with peripheral neuropathy in the past 10 years?
For those living with peripheral neuropathy, answers are key. In most cases, patients are frustrated with not knowing what caused their neuropathy and thus do not have answers from their neurologists on how to make it better. Research is paramount to their mental, physical, and emotional states, as it provides hope that a cure is on the horizon.
Over the last decade, research has provided discoveries of new treatment options that work for many PN patients, from over-the-counter and prescription medications to alternative therapies, including acupuncture and yoga. We are taking the right steps in research – we just need more patients and supporters to take them with us, by either participating in research studies or helping us fund our research programs.
What is your organization doing to involve patients in research?
We’re leading the way in involving PN patients in our research, and I think they are pleased to be a part of the solution! Since 2012, we’ve enrolled nearly 1,400 patients in our unique “Peripheral Neuropathy Research Registry,” which is focused on studying Diabetic, Chemotherapy-Induced, HIV/AIDS, and Idiopathic neuropathies. This Research Registry will facilitate both basic and clinical research studies that are expected to improve understanding of PN. Ultimately, the goal of the Registry is to improve the ability to diagnose, treat, and prevent peripheral neuropathy.
Not only does our Research Registry require researchers who are experts in PN, it also requires patients who are willing to be active participants in research studies and clinical trials and who, by virtue of their day-to-day experiences, can contribute their own observations for new approaches to research. A patient’s participation in this Registry will be the greatest offering that they can provide to him or herself, their family and other patients who are hopeful for a cure.
Who should consider participating in research? When is it the “right time”?
This is an easy answer for me – anyone who is willing and able to participate in research on peripheral neuropathy should do it! And, if I were them, I wouldn’t wait for tomorrow; I’d do it today. There’s no time like the present and I’m hopeful that the more PN patients that volunteer to help with research, the higher likelihood that this condition gets the attention that it deserves. Imagine 20 million people enrolling in our “Peripheral Neuropathy Research Registry!” That’d be an amazing amount of data to supply our scientists for their studies on finding better treatment options and, one day, a cure.
What is coming down the pipeline that people living with peripheral neuropathy should know about?
Two important papers will be published soon, which I hope will promote greater interest in peripheral neuropathy research and showcase the importance of our “Peripheral Neuropathy Research Registry.” With more awareness given to this condition and more attention given to PN research, I’m optimistic that we’ll soon have more answers to share with our patients and healthcare providers.
What would be your advice to someone living with peripheral neuropathy who is considering participating in a trial?
The Foundation for Peripheral Neuropathy is a fantastic resource for you. We have knowledgeable staff and a passionate Board of Directors, many of whom are also affected by PN. We are eager to answer any questions you might have regarding whether or not a clinical trial, or enrolling in our Research Registry, is right for you. Just ask us by calling 847-883-9942 or emailing us at info@tffpn.org.
And if you'd like to search for a trial today, you can do so on our website.
