News & Events
Foundation for Peripheral Neuropathy
The Foundation for Peripheral Neuropathy based out of Buffalo Grove, Illinois, focuses resources on research into treatments and cures and to consolidate advocacy efforts at local and national level to raise awareness. The public and government support to find solutions to neuropathy is not resulting in adequate financing for research and testing. With estimates of over 20 million people in US afflicted with the disease, PN is not as well known as many diseases which have only a fraction of that many people affected. Check out what is happening at the Foundation for Peripheral Neuropathy at its website www.foundationforpn.org . FPN has set up a Peripheral Neuropathy Research Registry (PNRR) coordinating patient information with five leading academic centers to help improve diagnosis, identify biomarkers, accelerate drug discovery and bring new treatments to patients as quickly as possible.
Past Meeting Notes:
February 24, 2018 Meeting Circle of Conversation People shared strategies and opinions. Below are some highlights.
Susie from Plymouth told the group she’s researched offerings by the Mayo Pain Rehabilitation Center, which offers both 2-day and a 17-day programs. She noted that the longer program costs $42,000 and is held Monday – Thursday for 4 weeks. Susie said that her insurance will assist with the cost and she plans to begin the longer program later this year. We will be anxious to hear from her after she has completed this! Click here to learn more
August 31, 2017 Meeting Dr Jeffery Allen: “Neuropathy updates from the University of Minnesota: Active and future clinical trials”
DR ALLEN, a neuromuscular specialist and clinical investigator, discussed clinical trials at UMN that are currently enrolling and those that are expected over the next year, including trials relevant to inflammatory neuropathies, diabetes, hereditary neuropathies, and others. The presentation was followed by a question and answer discussion. More information about the Painful Diabetic Neuropathy Clinical Trial (PDF) More locations can be found on the ClinicalTrials.gov page here: https://www.clinicaltrials.gov/ct2/show/study/NCT02427464?show_locs=Y
July 27, 2017 Meeting “Walkasins Helped Me Walk Again” Report from a patient with diabetic peripheral neuropathy
Dr Lars Oddsson, who first spoke to us in January 2016 shared the story about Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg. The technology is currently going through the regulatory process for medical devices under the FDA. More information is available on their website: http://rxfunction.com/
May 25, 2017 Meeting Alternative Treatments for Neuropathic Pain
Nick Rich, PharmD (doctor of pharmacy), a compounding pharmacist, owner of Lake Elmo Pharmacy, spoke to us about: alternative treatments to conventional medicine for the treatment of neuropathic pain. He explained what a compounding pharmacist does, and how it may be different from what your pharmacist does. He has over 13 years of experience as a compounding pharmacist, and is one of two accredited compounding pharmacies in Minnesota. The other compounding pharmacy being the Mayo Clinic in Rochester. More information can be found on the Lake Elmo Pharmacy website.
September 17, 2016 Minnesota Neuropathy Association 20 Anniversary Celebratiion Member notes for meeting
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Dr. Walk gave us the high level view of what neuropathy is along with the basic anatomy of the nerves and how the small and large fiber nerves work with the brain to tell us what we feel, etc. He told us his work is primarily research but that he does see some patients. Some, but not all of the topics he discussed:
- Effect of VM202 injection for patients with diabetes induced PN
- PCORI – Patient Centered Outcome Research Institute Trial Board approves $21 million funding
- CMT – Charcot-Marie-Tooth Dr. Walk discussed the genetic component and that the hands and feet are affected.
- PXT-3003 Study for CMT1A
- CIDP – The Gripper Study: IVIG Treatment Related Fluctuations in CIDP
2nd Speaker – Pam Shlemon – Director of Foundation for Peripheral Neuropathy – “What’s new & living well with PN” Pam shared how The Foundation for Peripheral Neuropathy got started and presented a slide show of the foundations current projects. Some of the topics she discussed:
3rd Speaker – Dr. William Kennedy – “Simple inventions that quantify touch on finger, vibration on toes and sweating in neuropathy” My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it. Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy. More information can be found on his website: The William R. Kennedy Lab
April 28, 2016 Meeting
Denise Nelson RN presented the business approach used in VIP Nurse Consulting to aid patients in working through the current health system when issues arise due to multiple and sometimes conflicting treatments. She offers a professional background in nursing. In acting as patient advocate both with patients and doctors, she provides a strong problem solving approach to make positive changes in the lives of her clients. Click here to learn more
July 30, 2015 Meeting
Brigitta Rice, MS, RPh, CHES presented the WarmFeet Program. Providing compelling descriptions of how this treatment can increase body temperature, circulation and the bodies normal healing function, she led the 40 or so meeting attendees in a demonstration of her relaxation program. The audience was given sample thermometers to measure a baseline body temperature and then after the session they were again asked to measure their temperature to determine the effect. Several in audience said they definitely felt an increase in temperature just sitting there, no need for the measurement. Ms. Rice offers a CD which provides the structured relaxation program for use at home. No expensive doctors visits, no medications or devices with this method. Brigitta Rice conducts relaxation sessionClick here to learn more
May 2015 Meeting by Marilynn Martinson, Board member
We had a very interesting meeting in May, with Dr. Frederick Claussen as our speaker. Dr Claussen, a Doctor of Chiropractic, has a good understanding about neuropathy, and many of his patients have come to him for neuropathy help. Dr. Claussen discussed how supplements could help neuropathy. He described many options for dealing with neuropathy pain and numbness. Some of the treatments he described are below. Several of us have used and been helped with these treatments in the last few years because of his suggestions. Click here to learn more
March 28, 2015 Meeting
Dr. Adam Loavenbruck of The Kennedy Laboratory associated with the University of Minnesota addressed a crowd of 40 attendees at the March meeting of Minnesota Neuropathy Association.
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Dr. Adam Loavenbruck updates research in progress on improved diagnosis
January 31, 2015 Meeting
The January 2015 meeting focused on improving quality of life while living with Neuropathy. The importance of exercise and flexibility were discussed with many demonstrations for those in attendance.
Something to do while sitting! First focus on your breathing. Take a deep breath in through your nose and out through your mouth making a Haaaaa sound. This tells your body it’s time to relax. Next follow the Yoga Chair exercise steps below in order stretching only as far as you are comfortable. Click here to learn more