In our blogpost. How to Get Support Without Leaving Home published in July 2020, we provided a summary of virtual support groups and social media sites for patients with PN. Here, we update our list, with some new additions and modifications. We hope that anyone struggling to find the support of others who understand the challenges of living with peripheral neuropathy, are able to do so. As so many of the PN support groups say: “You are not alone”.
Peripheral Neuropathy Facebook Pages:
Several patient-focused pages have been established to share information and allow patients to interact. In addition to the Foundation for Peripheral Neuropathy page, below are some other pages you can join:
All of these groups promise lively discussions and good information from fellow patients.
Support Groups: Mostly Virtual and Welcoming!
Groups have found that they connect well with each other through Zoom or other webcasts, phone, or other means.
Peripheral Neuropathy Resources Support Group meets the second Monday of the month over Zoom. The group meets from 4:00-5:30 pm ET. Anyone interested can get on the group’s mailing list by emailing email@example.com or going to their website.
Peripheral Neuropathy Success Stories has started Zoom calls every other Thursday from 2:00-4:00 pm ET. The group has taken a hiatus for the summer, but should be starting up again in September 2021. For more information, join the FB page, contact one of the administrators through FB messenger, or email the group leader, Michael Wright, at firstname.lastname@example.org.
Regional and Local Meetings:
Many of the Support Groups listed on the Foundation for Peripheral Neuropathy website have either paused or modified to become virtual through Zoom or other platforms. The ones that have gone virtual are welcoming members from anywhere- so don’t be afraid to contact the organizers and join if the time works for you. If the groups are not operating, the group leaders are happy to provide resources and answers to patients with questions.
U.S. East Coast:
DC Metro area: Peripheral Neuropathy Support Group of Metro DC. The groups meets on Saturday 2:00 -4:00 pm ET once a month. Currently meeting via Zoom. For more information or to register contact email@example.com.
Florida: The group meets via Zoom the first Monday of each month 1:00-2:00 pm ET. If interested, contact Tofthagen.Cindy@mayo.edu
Massachusetts/New England: The group meets on the 3rd Thursday 1:00 -3:00 pm ET via Zoom September – June. Contact Leslie MacGregor at firstname.lastname@example.org.
Massachusetts/Cape and Islands Neuropathy Support Group: Currently not meeting but the group leader is happy to answer questions or provide resources. Contact Kristina Meservey at email@example.com.
New York/Long Island: Group meets via Zoom the 2nd Weds of the month from 1:00 – 2:00 pm ET. For information email Lucia.Jamaluddin@nyulangone.org.
New York/Manhattan: Meets the third Thursday of the Month. Phone assistance only until September. Contact Steve Smith at firstname.lastname@example.org for PN resources or questions, or to find out more about the group.
Northern NJ and West Essex PN Support Group: Meets 3rd Weds in Mar, April, May, Sept, Oct, and Nov. Virtual meetings currently. Contact Dean Lewis at deasnL4@yahoo.com or Mary Robertson at email@example.com
CT Support Group: Tentatively will start up again in September 2021. Group Leader, Lynne McIntosh, is happy to answer questions or provide support or resources for anyone interested in starting a support group in Connecticut. Contact her by email: firstname.lastname@example.org.
Illinois/Chicago: Chicago Chronic Pain Group/Peripheral Neuropathy Group meets Saturdays 10:00-12:00 am CT via Zoom. For more information, contact Rev Angel Mason at email@example.com.
Indiana/Indianapolis: Chronic Pain Management/Peripheral Neuropathy Group meets via Zoom the third Monday of each month 6:30-8:00 pm CT. For more information contact Margaret L. Frazer@pfizer.com.
Pennsylvania/near Pittsburgh: Meets 3rd Weds April-October. Hybrid meetings: some via Zoom, thinking of starting in person. Contact Bill Wilshire at firstname.lastname@example.org.
Texas/Houston: Virtual 2nd and 4th Saturdays of each month, 1:00 – 3:00 pm CT. In-Person meetings will start once a quarter in September on the 1st or 3rd Saturday, 1:00 – 3:00 pm CT. The group will also have Tai Chi demonstration in September and a holiday party in December. For more information contact: Katherine Stenzel email@example.com or Western Neuropathy Association at firstname.lastname@example.org
U.S. West Coast:
California and neighboring states: Western Neuropathy Association organizes support groups throughout California and neighboring states. WNA is organizing webinars, as well as telephone support calls for anyone who is interested. Support phone calls are held several times a month. For more information, please contact WNA at email@example.com.
Calgary: Calgary Neuropathy Association meets every other Tuesday. Discussion groups and presentation will start again in September 2021 after a summer hiatus. The group will meet virtually as well on in person. Check their website for times and speakers, www.calgaryneuropathy.com.
While we are all waiting to settle into a ‘new normal’, there are some other resources available to patients with PN if you have questions or need recommendations:
- Check the Foundation for Peripheral Neuropathy website. We are updating the website all the time. You can find a list of our news articles and newsletters on the FPN Media page.
- Reach out to the support group leaders listed on the FPN Support Group page. Most group leaders have offered to answer questions or to offer suggestions even if their groups are not meeting.
- Many of the healthcare institutions have very informative websites. One such website that was recommended is the Mayo Clinic Connect.
- Chronic Pain Support & Connections is a Canadian nonprofit offering free on-line support. Support is available to Canadian and non-Canadian citizens. You can find more information on their website.
Have you found resources or support groups that you have helpful? Please let us know so we can share with others!
Are you interested in starting a support group? We can help you- and help connect you with current group leaders who are looking for assistance or willing to help share resources to start up a group.
Contact us at firstname.lastname@example.org.