About 1998, a PN support group was started and began meeting in a small room at a Fairfax County, Virginia district government center in Annandale. It was called “Peripheral Neuropathy Support Group of Northern Virginia”. The exact date and founders names are now lost. But, like so many “shoulders” we stand on, we’re indebted to those organizers.
At roughly that same time, two non-profits were formed, the Neuropathy Association (NA) and the Foundation for Peripheral Neuropathy (FPN). The NA’s website eventually included a list of support groups. As does the FPN site now.
In 2008 Steve Klitzman (Bethesda MD), newly diagnosed with PN, found this group on the NA website. There were no other PN groups listed for the DC metro area. He joined. A typical monthly meeting had about 10 participants. When Steve joined, he was the only person with a personal computer. The leaders used personal telephone calls to remind people to come. In 2010, it’s PN-afflicted leader had to drop out. The group was on the verge of drying up and disappearing.
Note: That was, and is, the usual pattern. Support Group leaders have PN and must drop out. Other members are unwilling to step up and put in hero-level effort (remember those phone calls?) That pattern – lonely leaders with PN who drop out without successors – is why there was only one PN group in a metropolitan area with roughly half a million patients. And why, today, there is only a tiny number of groups in the nation as a whole. And a big part of the reason PN remains “invisible” in spite of its massive impact on the nation’s health.
Instead of letting the group fold, Steve offered to lead the group. Using phone calls at first, gradually more and more members got computers and could be reached by email. After a while he started experimenting with getting speakers to come to the meetings. Doctors, at first, then other types. The group slowly grew along with Steve’s personal email list. But as newspapers began having financial problems it became harder to get notices posted in local papers.
In 2015, seeing a notice in the Neuropathy Association website’s support group list, Mike Foxworth (Reston, VA) joined the group. (Lucky timing: soon after that the Neuropathy Association and its website died, a victim of its inability to spark wide-spread public support.) Mike had retired a few years earlier, motivated in part by the slowly emerging effects of the PN that had been diagnosed 16 years earlier.
Mike started and edited a website for the group. First a 3-page “free” one, then a modest “paid” one financed by meeting Pass-the-Hat collections. With no other groups in the metro area, Google searches found the website and that helped more people find the group. The site became a repository for the information and insights gleaned at the meetings.
Mike also became the Audio-Visual guy for our speakers, moving from laptops with small TVs to using video projectors. As Steve focused on getting more and better speakers and Peter hosted an annual picnic, Mike developed Power-Point presentations on various PN topics.
On July 8, 2018, the personal story of Lynn and Robert Mobley was published in the Washington Post. This was the outcome of a months-long effort by support group members, including letters to the editors, direct contacts with editors and reporters, and much edit/rewrite activity. Their story, shared with millions of other Americans, revealed how Robert was first diagnosed with a disease that they had never heard of – peripheral neuropathy or PN.
Attendance and interest in our Support Group immediately soared. As did interest in and queries to the Foundation for Peripheral Neuropathy. In early 2019 David Bush organized a meeting with Project Management specialists who laid out a plan to “take it to a new level,” focused on more volunteers, better email, and better publicity. This fed into an ambitious speaker schedule pursued by Steve. We followed that plan in 2019, resulting in huge crowds of 40-80 people, both patients and caregivers, at the Annandale meeting site. Judson Vaughn and Walt Carlson joined to create this revised version of our website.
From that small group, we have steadily grown with more than 300 members now participating in the group’s events or reading our messages. Together, our team of volunteers have developed and executed programs and events designed to help our fellow PN sufferers and their family and friend.
- Help our members live more successfully with PN
- Connect with others so that they don’t have to face PN alone
- Understand what is going on in their bodies
- Advocate for public awareness and research
PN relentlessly wears away the strength of the team members. This is a logistical challenge – how do we keep going and expanding and advocating when our team members, our “founders”, are all fighting a disease? There are answers:
* The “Network” effort described elsewhere on this site is specifically designed to change this pattern.
* We must emphasize “teams”. Having one volunteer without backup is unsustainable. Likewise, relying on one volunteer to do many tasks is asking for trouble.
* Expecting leaders to possess vast quantities of PN knowledge as a prerequisite for leadership guarantees failure. Groups are tolerant and there are good sources of information available. Ultimately, it is “people” skills that provide the emotional and mutual support patients and caregivers need.
* We must attract younger patients and family members in our work teams, so they can grow into roles and be prepared to step in when needed.
* Presently we are testing the use of technologies so that local groups can be networked together. Zoom, Otter closed captioning, web, and social media technologies are proving very helpful to connecting with members who are geographically-dispersed or mobility-impaired.
We ended 2019 with ambitious plans to implement the network, expand the number of support groups and strengthen succession and teams originating from the DC-area group. The Covid-19 crisis has put much of that effort in slow motion and/or full pause.
We must succeed at this to build on (versus mourn the passing of) the efforts of all our founders. Ultimately, we are all “Founders.”