Leading with a common purpose
Meet four new National MS Society board members
Serving on the board of directors of the National Multiple Sclerosis Society is a personal matter for some of its volunteer members. The chair’s wife has multiple sclerosis. Two vice chairs live with MS. Another has devoted her career to researching MS. Finding a cure is their common goal.
“There’s no stone that I would leave unturned to try and get there,” says Peter Porrino, a Society volunteer since 1995 and the chair of the board since November.
These board members who help chart the course for the Society follow in the footsteps of Sylvia Lawry, who started the MS movement in 1946 when she set out to find help for her brother Bernard, who had the disease.
“I am thrilled with the leadership stemming from our board of directors,” says Cyndi Zagieboylo, Society President and Chief Executive Officer. “The board’s fiduciary oversight and strategic guidance responsibilities are prioritized while three strong vice chairs ensure continuous leadership.”
The national board’s 32 members, from 20 states and three time zones, come together in person at least three times a year and meet online another three to offer direction to Society leaders.
“People are doing this because they’re passionate about it,” not because they want to list it on their resume, says Bonnie Higgins, one of three vice chairs. “It’s because they want to find a cure for MS.”
Board members are elected by the delegate assembly, which includes national and local leaders. The board’s task: Govern Society property and business. But members go beyond the boardroom to support and connect with people affected by MS and to raise funds, recruit donors and corporate partners, and thank other volunteers.
The business executives, lawyers, college administrators and professors, physicians and retirees on the board offer their time, knowledge and personal experiences during renewable one-year terms.
In recent years, faced with COVID-19, board members tackled particularly difficult choices, like operating at a deficit after losing event revenue. Now that the Society can again organize long-established in-person fundraisers such as Bike MS® and Walk MS® as well as plan new events, a modest increase in its revenue budget for fiscal year 2023, to $165.6 million, is in the forecast.
“I’m delighted in the state of the Society right now,” says Porrino. “We came out of that pandemic so much better than any of us could possibly have hoped. Cyndi had to make some really difficult decisions. They weren’t fun, but I think they set us up for success down the road.”
Caroline Whitacre, a retired MS scientist who serves as a vice chair, is pleased to see the Society not only set the pace in research, but also rebound from the shutdown and grow. What also makes her volunteer role as a board member fun and fulfilling, she says, are the relationships she’s made with others with the same goal.
“I’ve really developed some very deep friendships with people on that board because we have a common goal of curing MS.”
Since there is so much at stake, members at times face what Higgins calls “creative conflict,” but that’s what leads to better results, she says.
“You need to have the head-butting and conversations that drive you to your goals.”
The road ahead
When Porrino was introduced as chair to Society staff in February, he reflected on the changes he’s seen since he became a chapter trustee almost three decades ago. The Society continues to drive advances and now also helps guide research by others, he said. The organization is also an MS leader in the world, using its voice in nationwide activism efforts, he added.
Among the board’s upcoming endeavors:
- Increasing diversity at all levels, including the board, and making sure many different types of people are involved and heard in the Society’s work
- Continuing to lead in MS research internationally with efforts such as Pathways to Cures
- Making sure volunteers and staff have the resources they need to complete the Society’s mission
- Providing oversight of digitalization plans to the benefit of all those who interact with the Society
- Working on the 2025-27 strategic plan.
Porrino concluded: “My goal is pretty simple: I just want to find the cure.”
Along with the cure
The Society’s work is broader than its ultimate mission. With information, support and programs, it has contact with almost two-thirds of the estimated 1 million people with MS in the U.S.
When Dana Foote, a vice chair, joined the board in 2011, she thought the Society was all about research. “Seeing the services part in action, the advocacy in action, made me realize what a holistic approach the MS Society brings, not just raising money to fund research,” she says. “It’s about helping the individual at all stages in life and all stages in the disease.”
Other board leaders also point to the many roles the Society plays, whether through its MS Navigators, who help people address obstacles in their way, or the advocacy team, which helps shape legislation through the stories of those living with the disease.
Directors are impressed by what they’ve seen. “I’ve always said this about the Society: We punch so far above our weight, it’s ridiculous,” says Porrino.
Among those driving this work are some 706,000 donors, 382,000 event participants, 55,000 volunteers and 41,000 activists as well as 800 staff members.
“I haven’t talked to a single employee at the MS Society who wasn’t passionate about being here, which I think is great,” Foote says. “That’s from the top down and everywhere in between.”
A happy ending
Board leaders hope more growth and revenue are ahead for the Society.
“The more we can raise money,” Foote points out, “the more we can help people, whether it’s through research or support.”
But what she really wishes for is the day when the Society is no longer needed, thanks to the cure.
“All of it comes back to the ultimate goal of putting ourselves out of business, which is a good thing in this situation,” Foote adds.