National Multiple Sclerosis Society President and CEO Cyndi Zagieboylo knows all about MS. It has been her life’s work. But what she and everyone in the MS community don’t know yet is the cause of this unpredictable disease of the central nervous system, and the cure for it. But, they are getting closer, thanks to an attitude of “whatever it takes”.
Whatever it takes
“Whatever it takes.” That’s a big statement.
“Whatever it takes” means we are all in. It means we are laser focused on common goals and we are moving toward those goals with dogged determination. It means we will do whatever it takes to reach a solution — no matter how hard, how complex, or how long it takes.
National MS Society founder Sylvia Lawry did whatever it took for her brother Bernard who was diagnosed with MS. From the moment she placed a classified ad in the New York Times back in 1945 — looking for anyone who had recovered from MS, she was all in. This led to the launch of an international movement to end MS, work I consider an honor and privilege to continue.
My first job at the National MS Society back in the mid 1980’s was to connect people with information, resources and each other, to reduce the terrible isolation that can occur the moment a person is told “you have MS”. Back then, more than three decades ago, we tackled challenges the same way we do today—bring together people with as many perspectives as possible and shine a light on what people with MS are experiencing and what they need. This is how solutions are found. We are all about pulling together everyone who wants to find solutions for people with MS.
We aim to engage people in the MS movement in meaningful ways — meaningful for each person. Personally, I am passionate about the concept of resilience and I’m inspired by people’s abilities to be resilient. We have found through our Everyday Matters Program that when people develop skills in resilience, when they are able to adapt to the challenges and changes MS brings, they are better able to move forward and focus on living their best lives. Everyday Matters helps people find their own resilience and apply it to the challenges and opportunities they face. Overcoming challenges, achieving what’s important, doing what brings meaning in life, being happy.
Through Everyday Matters and connecting with others, people learn to take steps toward happiness, achieving a life goal—whatever it takes.
We also know the importance of connections. MS is a disease that breaks the connections within the central nervous system, interrupting the flow of information from the brain to the body. But, sometimes, for people living with MS, the challenge is the connection outside the body. Being connected to the right person, at the right time, with the right resources is key, even life-changing.
Take the case of Jackie. When she first contacted the National MS Society, her power had been turned off, the food in her refrigerator had gone bad. She hadn’t showered in more than a week because she had no hot water.
Her Medicaid benefits had been discontinued, cutting off her home care services as well as access to catheters and other incontinence supplies she desperately needed.
Jackie was running low on her medications, including the one that managed pain so she could get into her wheelchair and to the bathroom. She had resorted to rationing her medication — taking some once a day instead of twice, and others every other day.
Jackie was homebound, with no means of transportation. She was struggling to take care of these issues on her own, and her limited support system wasn’t enough.
When Jackie called the Society, she was connected to an MS Navigator who recognized the seriousness of her situation immediately and requested a wellness check from the local police department.
About 10 minutes into the conversation, Jackie recalls the MS Navigator instructing her to put down the phone and unlock the front door because she had someone on the way over. A police officer arrived. He told Jackie he was there to help. He stayed for 3 hours and even had the paramedics come to check her out. Jackie remembers the officer giving her a hug, she said it was the first time she had been hugged in years.
The Society assigned Jackie a case manager to help get her benefits reinstated and to ensure she had appropriate care and medicine. The case manager helped Jackie apply for a home delivery food service for people with medical needs that provides nutritious meals each week.
She was also connected to the Weatherization program and Home Builders Foundation, who are building her a ramp and fixing her patio door so she has full access to her home, can get outside by herself, and has an option in case of an emergency.
Jackie attributes her survival to several “angels” – people doing “whatever it takes” to help her turn her life around.
Sometimes, “whatever it takes” – might take you to places you never thought you’d go – like the U.S. Capitol.
The Society recently wrapped up its annual Public Policy Conference in Washington D.C., where 300 MS activists stood up to MS and boldly communicated what they need to live their best lives.
It can be hard to speak up and tell your personal story – your truth — about what MS has taken from you and your family. And it takes courage to ask for what you need, to tell Congress what they need to do to help you and everyone else living with MS.
These activists had the courage, strength and resiliency to do just that, they did “whatever it takes” to have a voice, make it heard, and make change happen for people living with MS.
Each year, hundreds of thousands of people take part in our fundraising events, walking the miles, cycling up and down hills, trudging through mud obstacle courses – whatever it takes – to raise the money to fund programs and services like MS Navigators, and to fund the research to find a cure for MS.
Seeing this commitment always takes me back to the beginning of my journey with the Society and a dear friend. My mentor, my colleague, my volunteer partner, my very good friend, Eli was a tremendous leader in the MS movement. He started serving at the tender age of 6 when his father was diagnosed with MS. Through the decades that followed, Eli worked to end MS in loving memory of his father and his uncle and his sister—all who had progressive MS.
Eli died last month, before he could realize a world free of multiple sclerosis. I miss him dearly. Eli so wanted a world free of MS and so do I.
And that is what we will achieve – whatever it takes.
Cyndi Zagieboylo became president and CEO of the Society in October, 2011. She began her National MS Society career in 1985 and has worked with every CEO of the organization including founder, Sylvia Lawry. Achieving the National MS Society mission is her life’s work.
Cyndi serves on the Society’s National Board of Directors as CEO and president, on the National Health Council Board of Directors where she currently serves as past Chair, and on the Multiple Sclerosis International Federation CEO Advisory Group and Board of Directors. She is a founding member of the International Progressive MS Alliance which was launched in 2013, and she provides leadership as chair of the executive committee. The Alliance was formed to expedite the development of therapies for progressive MS through connecting resources and experts around the world.
Cyndi’s priorities include:
Maximize global participation in and contributions to research priorities including the Progressive MS Alliance
Effectively resource strategies that ensure people affected by MS live their best lives today—this includes the implementation of a comprehensive MS Navigator service and Edward M. Dowd Personal Advocate Program to provide case management to people with the most challenging circumstances caused by MS.
Born in Norfolk, Massachusetts, Cyndi received her bachelor’s degree in rehabilitation counseling and psychology from Springfield College, followed by a master’s degree in social psychology from the University of Connecticut. She lives in Honeoye Falls, NY.