What is the Peripheral Support Network?
Millions of people suffer from Peripheral Neuropathy, a term that describes a myriad of nerve-related disorders. Despite its prevalence among the general population (estimated at 1 in 10), it is largely undiagnosed, misdiagnosed, and misunderstood.
Research for a “cure” goes on, but in the meantime, PN patients are coping with numbness, pain, and balance issues on their own, including self-medication and self-care. Too few individuals are affliliated with supportive groups, which offer hope outside of medical services.
There are relatively few local groups chartered to provide information, education, and support, or advocacy for greater funding.
The Peripheral Neuropathy Support Network (PNSN) was formed to help isolated patients find and form local groups and help organize them into viable, long-lasting support groups through the country.
The PNSN does this through personal relationships with patients and community leaders. It provides personal consultation, links relevant content and other groups, and fosters interaction between groups.
The PNSN is an independent 501(c)(3) legal entity set up solely for charitable purposes. It relies on periodic donations from the community and public fundraising to support is activities. As a community resource, it engages in outreach to interested parties (PN patients and care givers, medical and healthcare professionals, community organizers, churches, life enrichment directors of senior living facilities, etc.) to advance public awareness of PN and encourage development of new local support groups.
People working together is the cornerstone of PNSN and forms the basis for a strong local community-based organization and an umbrella network. Therefore, active participation is essential to individual growth and organizational strength.
What services can community-based groups expect from the PNSN?
- Short-term help with organizational and leadership skills, including training and consultation with membership list generation, videoconferencing tutoring, fundraising, effective meeting training, PR outreach, etc.
- A content repository in form of a website, including blog articles and Footnotes
- An exclusive area on the Network website for each local group to distribute information and publicize meetings/events
- A web-based activity calendar
- A YouTube channel with content, which can be consumed individually or used during local meetings
- A Facebook page for information exchange and discussion
- Help identifying individuals who are looking for a community-based group
What PNSN can expert from local groups?
- An active interest in Peripheral Neuropathy, its causes, implications, and prevention
- An interest in fostering supporting community-based programs and events for education, information, and socialization
- An openness to accepting new members to the group no matter where they reside
- Ongoing meetings and events to promote local community-based communications
- A willingness to help create and bolster other groups through consultation