Necessity is the mother of invention

by Cyndi Zagieboylo

The old saying “necessity is the mother of invention” has played out during this COVID-19 pandemic.

Knowing that people affected by multiple sclerosis might be isolated from family and friends, it was urgent that we find new ways to connect people to the MS movement. Staying connected has never been more important.

In the beginning of our Walk MS season, we had to halt in-person events by the hundreds. Walk MS is for fundraising, first and foremost. It is also a community rallying point — a place where people in the MS movement come together and make their feelings and commitment known. We decided we needed a virtual place, so we pivoted and created that space.

Jennifer Lee, executive vice president of fundraising events, laments, “We were so excited to kick off a record-breaking Walk MS campaign. However, time could not be wasted commiserating because we knew our walkers were feeling disappointed as well. They have always been our most connected fundraisers, coming together because they have MS or care about someone with MS.” Lee learned that in the process of going virtual, “I came to appreciate we can still engage people in our work, deepen existing relationships and bring new people into the MS movement — even when we cannot get together in person.”

In addition to Walk MS and other fundraising events, we had to shut down all in-person education and connection programs. This is a big concern. Many rely on in-person programs to connect with people who understand what they are going through. Feelings of isolation and anxiety increase when we are apart. We need more and better ways to connect virtually, especially when virtually is the only option.

Many self-help groups started meeting online during the pandemic. Yolanda Treiguts, a 30-plus-year leader of the South Cook group in Illinois, decided to go virtual when she heard from members who were isolated. Treiguts says, “I felt digitally unqualified and very nervous that the meeting would not go well.” But after an amazing virtual meeting, Treiguts says, “It is a powerful good feeling to learn new skills and keep the group going.”

Karen Hooper, vice president of program development and engagement, video conferences with self-help group leaders once a week to share ideas and learn together. “Isolation is not new to the MS community,” Hooper says. “Volunteer leaders are getting creative to ensure that members can support each other virtually.” To find a group, visit nationalmssociety.org/Resources-Support/Find-Support/Join-a-Local-Support-Group. To learn more about starting a group, email peerconnections@nmss.org. If you prefer the phone, call an MS Navigator at 1-800-344-4867.

We’ve made big strides in our virtual presence. In the short term, we had to. We will use what we learned to expand opportunities and to enhance in-person experiences when we can be together again.

Where are you in this new virtual world? What’s holding you back? I’d love to hear from you. Let’s stay connected!

Cyndi Zagieboylo
President & CEO
National MS Society

Fall 2020

Let me know your thoughts. Email me at cyndi@nmss.org.