Christine DeFilippo’s journey with multiple sclerosis (MS) began while she was on vacation in 2017. She first noticed a tingling sensation in her legs, followed by waves of hot and cold. Soon after, her legs felt like Jell-O, and she eventually woke up unable to walk. 

Doctors initially diagnosed her with transverse myelitis, but uncertain about the accuracy of that diagnosis, she sought a second opinion from a neurologist at Johns Hopkins Hospital.

Diagnosing MS can often take years, but advancements in medical technology, updated diagnostic criteria, and the use of blood-based biomarkers have led to greater accuracy. After undergoing multiple rounds of testing and a long period of uncertainty, DeFilippo finally received the correct diagnosis. Within eight months of experiencing her first symptoms, she was able to begin disease-modifying therapies designed to reduce relapses and slow the progression of the disease.

The National MS Society estimates more than 2.8 million people are living with MS globally, while the disease afflicts almost 1 million in the U.S.

However, thanks to the more than 50,000 people participating in the annual MS Walks and Bike Rides across North America, the organization raises millions of dollars to support those afflicted with the disease. This collective effort has funded research and provided patient support and advocacy for policy that improves access to treatment and care.

DeFilippo was fortunate to receive a diagnosis within a year of her initial symptoms — a relatively short timeline for MS. Still, the experience was frightening for both her and her family.

“Anytime you have a medical situation that is progressive with no cure, it’s a hard thing to rationalize,” DeFilippo said. “It’s emotional.”

Diagnosed with relapsing-remitting MS — the most common form of the disease, marked by flare-ups followed by periods of remission when symptoms may fade — DeFilippo is grateful she can still enjoy the activities she loves.

“I’m lucky because I don’t have a significant number of lesions,” she said. “I haven’t had new disease symptoms.”

Since leaving her corporate job two years ago, she has focused on growing her coaching and consulting business while also dedicating time to raising funds and awareness for the National MS Society.

Because MS is a progressive and unpredictable disease, DeFilippo makes it a priority to do as much as she can each day, knowing there’s no way to predict when or how the condition might advance.

Meet the former corporate executive turned MS advocate who’s grateful for the time she now dedicates to raising awareness and supporting the MS community—this week’s Personality, Christine DeFilippo:

Place of birth: Pittsburgh.

Where I live now: The West End.

Education: Carnegie Mellon with a degree in industrial management.

Family: Husband, Joe, two daughters and an Aussiedoodle who keeps me walking!

What is Multiple Sclerosis (MS): It’s a neurological disease and an auto-immune disease that can lead to a wide range of symptoms. It causes the immune system to mistakenly attack the protective covering of nerves, creating lesions. It can impact vision and physical capabilities from the lesions that form on the spine and the brain. There are a few different types of MS, with the most common and most treatable being Relapsing Remitting MS (RRMS). RRMS is characterized by new or worsening symptoms (relapses) followed by periods of recovery or remission. Symptoms of a relapse vary from person to person but include things like vision problems, fatigue and mobility issues.

Who’s at risk for MS: MS can impact anyone, but is most commonly diagnosed between the ages of 20 and 50. Women are more likely than men to be diagnosed.

How is MS diagnosed: MS is diagnosed through a series of tests — bloodwork, MRI’s of the brain and spine and often a spinal tap to see if the markers are present that indicate MS.

MS Treatment options: Currently, there is no cure for MS. However, there are a number of disease-modifying therapies (DMTs) that can treat MS. These work in various ways to keep the immune system from attacking the nerve fibers.

There are more DMTs available for RRMS, and research has contributed to new and different treatments each year.

The National Multiple Sclerosis Society is: NMSS is a non-profit organization dedicated to ending the effects of MS through research, advocacy and services for people affected by the disease.

They fund research and advocate for social and political change. They also have comprehensive educational and support resources for people living with MS and their families.

Mission: To cure MS and empower people affected by it to live their best lives.

NMSS Founder: Sylvia Lawry, who sought a cure for her brother.

When was NMSS/Richmond Council founded: The Richmond Council was founded a few years ago. We aim to help raise awareness and advocacy for the NMSS in Richmond.

Having a local council helps extend the reach of the broader VA/WV Chapter of the NMSS. The council strategy is used by the society to create a more localized opportunity to do our work.

When and why I got involved: I started attending Walk MS in 2014 to support a colleague who lived with MS. After my diagnosis in 2017, I formed an MS Walk team and became more involved because I wanted to make a difference for those living with the disease. I feel like I’m guiding my future in a way. I’m not someone to sit on the sidelines when I can do something and make an impact.

That’s what led me to taking on broader volunteer positions with the society.

No. 1 goal as a board trustee and co-chair of the NMSS/Richmond Council: To continue to grow the council. As we expand, we expand the reach of the organization, which is essential to continue to drive the mission of the organization in the area. As co-chair for community engagement on the board of trustees, my goal is to expand the reach of councils. We have a couple of very active councils, but a top goal is to create a new council in our footprint across VA/WV.

Strategy to achieve goal: To continue to build our presence and awareness of the opportunity to engage with the council.

Biggest challenge: It’s hard to find the right connections with people who live with MS or have a passion for getting involved with the NMSS. We continue to strive to find passionate people who can help drive advocacy and support for the organization in local communities.

Upcoming events and details: The MS Walk Richmond is Saturday, May 3, at the National MS Society Richmond Office, 4200 Innslake Drive in Glen Allen at 10 a.m. The MS Bike also is coming up on May 31 – June 1. Join the Bike MS: Colonial Crossroads Facebook page for more details. Details can be found on: events.nationalmssociety.org

How I start the day: I start and end each day with gratitude. Some days I’m just grateful that I didn’t wake up with the dog staring me down, ready to go out! But the habit is a good one and really helps you find things to be grateful for, even on the hardest days.

Three words that best describe me: Investigative, enterprising and motivated.

Top three on my music playlist: Chappell Roan, Taylor Swift and Broadway musicals.

Something I love to do that most people would never imagine: I’m an avid baker. I like to take an ingredient and then challenge myself by finding recipes that have that ingredient and making things that I’ve never tried before.

Inspirational quote: “We cannot change the cards we are dealt, just how we play the hand.” — Randy Pausch.

Most influential person: My father. We lost him while I was in college, but he really shaped who I am today. Throughout my life, I’ve often thought about how he’d handle a situation and used that to guide my actions. He was a creative, intelligent, interesting and kind man.

Most influential book: Randy Pausch’s “The Last Lecture.”It was written by a professor at Carnegie Mellon who was diagnosed with terminal pancreatic cancer. He provides some key insights into how to live your best life.

What I’m reading now: I just finished “Broken Country,” by Clare Leslie Hall. For me, one of the big takeaways is that the past is the past for a reason. Decisions you’ve made in the past shape the future, but you can’t dwell on or rethink (or relive) the past.

Next goal: I want to finalize my growth strategy and develop a broader client base for my new business. I also aim to meet my fundraising goal for MS Walk this year!