With an immunology background and doctoral research under her belt, Caroline Whitacre decided early in her career to focus on a field that would allow her to have real impact in healthcare: multiple sclerosis. Thanks to a fellowship from the National Multiple Sclerosis Society that paid her salary for two years as she trained at Northwestern University Medical Center in Chicago, she started on a professional path she’s still focused on almost five decades later. Now retired from academia, Whitacre volunteers her time and offers her scientific expertise as a vice chair of the Society’s national ..read more

Bonnie Higgins, who took part in the MuckFest obstacle run in West Orange, New Jersey, in 2015, likes to hear others’ stories at events. Bonnie Higgins was working long hours as an up-and-coming young executive at Johnson & Johnson when she had her first seizure, diagnosed initially as sleep deprivation. Finally, an MRI revealed she had brain lesions. For Higgins, multiple sclerosis had the face of her second cousin, who used a wheelchair and had to be carried out the door by strong men anytime she went out. So, when Higgins’ own diagnosis came in 1994, she went into denial: “No, that’s ..read more

Dana Foote speaks from experience when, in her role as a vice chair of the National Multiple Sclerosis Society’s board of directors, she talks about helping people with MS navigate the healthcare system. Last January, Foote, who was diagnosed with MS in 1998, spent some 20 hours sorting out insurance issues after switching her medication. “Why do they have to make it so darn hard?” she asks. The painful experience made her wonder how people with less access to resources figure things out. A partner at KPMG, LLP, the audit, tax and advisory firm, Foote contributes more than her expertise as a v ..read more

Peter Porrino, the new chair of the Society’s national board of directors, and his wife, Andy, attended its Leadership Conference in Dallas last November. When Peter Porrino started volunteering at the National Multiple Sclerosis Society almost three decades ago, he was driven to do something about his wife’s recent MS diagnosis. In 1991 Porrino and his wife, Andy, were raising two young children in Connecticut. While Andy was shaving her legs in the shower one day, she noticed that she couldn’t feel the razor blade on her right leg. Several MRIs later, they found out why. Soon after, the co ..read more

A poet’s perspective after decades with the disease and a fruitful career Cynthia Huntington When Cynthia Huntington started having sudden muscle stiffness on the right side of her body at 35, she knew even before her doctor confirmed it that, like her mother, she had multiple sclerosis. And even though her adolescence in western Pennsylvania had been marked by her mom’s MS, Huntington refused to consider her own diagnosis a disaster. “I wasn’t afraid of it,” she says. She knew her life would change, but also believed that she would be mostly fine. Medical understanding of the disease had co ..read more

Sarah Adam lives with MS — and is one of two women athletes on the USA Wheelchair Rugby team. The road of life is full of twists and turns. No matter how much you try to plan your route, a detour is likely. Sarah Adam. Photo courtesy of the Lakeshore Foundation Sarah Adam, one of two women athletes on the USA Wheelchair Rugby team, knows all too well how an unexpected turn in the road can change your plans and your life. Nearly 10 years ago, Adam had dreams of graduating from college and becoming an occupational therapist, but she had to take a detour after being diagnosed with relapsing-rem ..read more

How art and teaching keep me connected to my mind, body and community. by Suzanna Challen Art journaling helps Suzanna Challen express the feelings she can’t put into words, specifically as they pertain to her MS. Art journaling is accessible. There are no rules. I was introduced to this expressive art form five years ago, and my practice has allowed me to befriend myself during my journey with multiple sclerosis. After sudden vision loss in 2018, I was sent for an MRI. My MS diagnosis followed. Art journaling became my refuge from “scanxiety.” I put my fear on the page. I made major li ..read more

What I’ve learned over decades living with MS. by Debbie Petrina In the beginning I was 25 years old when multiple sclerosis became a part of my life. It was the 1980s — the MS dark ages. No social media, no cell phones. A calculator sat on my work desk, not a computer. The letters “MS” were obscure. Neither my house nor my car had air conditioning. I didn’t just feel alone; I was alone. Debbie Petrina doesn’t let MS stop her from traveling and creating new experiences with her family. It’s amazing to have lived through the MS evolution. Sometimes I hear, “So much is available to folks diagn ..read more

Insights from family members, friends and colleagues who are connected to someone diagnosed with MS By Matt Alderton Bryan Rodriguez was just 16 years old when his mother, Luz Loeb, was diagnosed with multiple sclerosis. A single mom of three who balanced family, education and career, Loeb moved to Philadelphia from Puerto Rico as a child, became a parent at 18 and began college a year later on a full-ride scholarship to the University of Pennsylvania, where she often attended class with her two oldest children in tow. She was used to challenges. But MS was a different kind of challenge. Not o ..read more

Golfers participate in a variety of DIY events. by James Townsend Back in 1995, Blake Scheider met three guys at an “UGLY (“Understanding, Generous, Lovable You”) bartender contest in Pennsylvania who had been raising funds for multiple sclerosis. Together, they came up with the idea for the Longest Day of Golf — an event that challenged people to play as many holes as they could over 24 hours. The event, held at the historic Berkshire Country Club in Reading, Pennsylvania, has raised nearly $500,000 over the years for the National Multiple Sclerosis Society as part of the DIY events program ..read more