October 2016 begins the 10 year anniversary of the Foundation for Peripheral Neuropathy.
The Foundation for Peripheral Neuropathy (FPN) is all about people living with neuropathy. This has never changed. And it has made the Foundation a leader in this area. Our mission is to dramatically improve the lives of people living with peripheral neuropathy (PN)—to mobilize scientific leaders and aid in the development of scientific innovation in order to advance new medicines and ultimately a cure for a disease that attracts little attention even though it impacts over 30 million Americans and many more world-wide.
Let’s take a look back at our achievements offers a glimpse into the future…
Peripheral Neuropathy Research Registry (PNRR)
It is FPN’s vision to bring experts together to work in a collaborative environment in order to advance research. In 2009, we assembled a few leading experts in the field of peripheral neuropathy research to determine how FPN could best invest our funds. Our goal was to make a long-term impact that required collaboration among clinicians, academia, pharma, and NIH. That is how the idea of creating the first Peripheral Neuropathy Research Registry came to be. FPN recognized the need and the long-term impact a research registry and biorepository would have on the scientific community by changing the paradigm in which scientists share their work.
This initiative is a multi-year project and required a significant capital investment of five million dollars and an investment of $600,000 annually to grow and maintain the PNRR.
In 2009, we established our scientific advisory board and contracted with Indiana University (IU) Department of Medical and Molecular Genetics (Division of Hereditary Genomics) to help us design and host the PNRR with the biological samples (DNA, plasma and serum) that are collected from each patient. In 2011, we recruited four scientists from prestigious academic centers across the country chosen for their particular research interest peripheral neuropathy.
The end goal of the PNRR is to improve diagnosis, aid in the development of drug discovery, establish a framework for clinical trials and find a cure for peripheral neuropathy. This natural history study of peripheral neuropathy is filling a huge gap in the field, stimulating both basic and clinical research. We are excited about the future of the PNRR and the study results that will come from the data and biospecimens. In the coming months, will be sharing the first published scientific study results generated by the data in the PNRR.
To learn more about the PNRR and our consortium partners click here.
The Foundation hosted its first bi-annual international symposium in 2012. The goal of these small, unique style conferences is to bring together a multi-disciplinary group of scientists and clinicians representing academia, pharma, National Institutes of Health (NIH), and the Food and Drug Administration (FDA), all who have a role in developing effective treatments and eventually a CURE. Typically individuals from such diverse backgrounds do not convene to discuss the challenges brought forth in developing drugs.
FPN’s goal is to provide a forum for open discussion to bring the challenges of drug discovery for peripheral neuropathies to the forefront. It allows participants to collaborate with the intention of uncovering the roadblocks in translational research in order to move the field forward.
Translational research refers to the “bench-to-bedside” harnessing knowledge from basic sciences to produce new drugs, devices, and treatment options for patients that can be used clinically or commercially.
A second goal of the symposia is to foster development of new investigators in the peripheral neuropathy research field. These symposia are designed to give junior investigators an opportunity for one-on-one interaction with leaders in the field and help shape the final recommendations that will come out of the symposium. The Foundation is proud to have provided over $100,000 in travel awards to 45 junior investigators to attend the last 3 symposia. These junior investigators were nominated by the speakers as rising stars in the field of neuropathic pain.
The third goal is to share the findings from each of these meetings. Findings from our 2012 Challenges in Developing Novel Therapies for Peripheral Neuropathies and our 2014 Designing Innovative Therapies for Neuropathic Pain were published as supplements in the Journal of the Peripheral Nervous System (JPNS). Findings for the 2016 symposium will be published in the JPNS March 2017 issue.
We recently concluded our 2016 symposium on September 9th, Advances in Neuropathy-Emerging Therapies, with over 90 participants. It was one of the best to date with feedback including “it is the best scientific meeting I have ever attended; it provided collaboration among a multidisciplinary group of experts involved in patient care and drug development.”
Outcomes from our symposia included: 67% of attendees learned of a new technique or resource that will be useful in their work and 75% of attendees said the sessions gave them ideas for new research possibilities that they would like to pursue in their labs.
So we ask ourselves, with all of this information gathered from our three symposia what do we do next to continue on this trajectory and bridge the gap between basic science and translational research to bring effective treatments to patients? The Foundation’s next step will be to identify the one burning issue from each symposium and then initiate small working groups that will address the questions over the course of the next two years. Working groups will present their progress at FPN’s 2018 symposium.
Awareness and Education
Awareness and education is at the forefront of our mission. The overall goal of patient education is to build awareness of the effects of peripheral neuropathy, to provide an ongoing resource to patients, families and healthcare providers and to share news of treatment developments and pain management opportunities.
Our commitment has remained constant throughout our 10 years. In 2015 we were proud to welcome the former Neuropathy Association members and happily began serving them. With our small but efficient staff we have answered and helped over 30,000 patients via phone calls and emails. We also transformed the Foundation’s website making it more user-friendly and taking cues from you to enhance the content and accessibility. We started with 1,500 hundred hits to our website per month and 10 years later we have over 60,000 hits per month. Our E-News and E-Tips reach over 50,000 constituents monthly and to date we have published 16 printed newsletters (printed and e-news archives).
This past year the Foundation was invited to participate in several pharmaceutical companies’ stakeholder engagement meetings. We see a paradigm shift where more and more pharmaceutical companies are engaging patients and leading patient advocacy organizations in their ongoing efforts to forge better paths to achieve outcomes-based, high-quality patient care. These meetings spark provocative, actionable dialogue on some of the critical issues impacting patient care, including how to best insert the patient voice into evolving health care decision making.
In 2017, the Foundation will be developing a physician portal to provide materials and resources for physicians to distribute to patients, and plans to convene a national patient conference.
Connect. Support. Hope.
This celebration gives us the opportunity to honor the progress we’ve made as we cast a hopeful eye toward the future.
Thank you all, each of you, our generous donors, members, readers, our research partners, scientific advisory board and board of directors—past, present—for giving. These relationships, for some now a decade long, have been the lifeline of our endeavors.
For 10 years, the Foundation for Peripheral Neuropathy has been a trusted guide for many traveling a number of different paths to discover how to cope gracefully with peripheral neuropathy.
Today, we are at an important crossroads— a defining moment that will shape the Foundation and allow us to take a leadership role in development toward a cure. The key to our success will be the willingness of each of you to participate and to invest in the work the Foundation is doing on your behalf.