Knowledge is Power, and so is Self-Advocacy

Posted on June 4, 2025 by Kate

Living with multiple sclerosis often means navigating a complex healthcare system, where self-advocacy becomes essential. Recently, I experienced firsthand how crucial it is to stand up for yourself in medical settings.

About 6 months ago, I made the decision to switch to a new neurologist, mostly due to the cost of my annual MRIs. I did my research and found an MS specialist 1.5 hours away and decided to give him a try. I arrived at the office, was pre-screened, and all seemed well until the doctor came in and I found myself being questioned and patronized in a way I have never experienced in a medical setting (or any setting really). Despite living with MS since 2016, doing well on the same DMT for 6 years, and working for MSAA for the past 3 years, the doctor asked me to justify my treatment and explain its benefits in detail before he was willing to continuing the conversation. I never received a physical examination, he never once asked about my lifestyle, and the entire interaction felt like a test. I guess I passed because he did end up ordering my next MRI and continuing with the same treatment path I was already on. The experience left me feeling unheard and disrespected.

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The Growth She Couldn’t Yet See

Posted on May 28, 2025 by Claudia Chavez

Once in a while, I face challenges that remind me just how much I’ve grown over the years. I’ve come to understand that challenges are actually opportunities for personal growth—and that some setbacks are blessings in disguise. Looking back, my younger self could never have imagined how resilient I would become.

She would be proud of how much my perspective has shifted as I’ve grown older and wiser. I used to cling so tightly to people, places, and things that I ended up suffocating the very opportunities life was offering me—to explore, to learn, and to flourish in unfamiliar territory. It was hard to say no to things that drained my energy and happiness. But over time, I’ve learned that while life can be unpredictable and full of obstacles, I have the power to choose my perspective. And today, I choose to believe in myself and trust that I can handle whatever comes my way.

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Proud Memories

Posted on May 16, 2025 by MSAA

By Bonnie Lynn Ellison

May is a good time to reflect on myself, and what my younger self would be proud of. When I was young, I thought life was a rodeo! I competed in the National Little Britches Rodeo from 8 to 18 years old, and was proud of my ribbons, buckles, and trophies! I learned, if you got thrown off, you got back on the horse!

When I was young, I also played my guitar and sang in talent shows, from 7th grade through high school. In college, I performed with the FAB Company. We toured nationally in the early 1970’s, recorded four albums, and were contracted with the major international talent agency, William Morris. I’m proud that we wrote our own original music, songs, and comedy. We did concerts! I thought I was Taylor Swift!

I fell in love, got married, and two years later, I was diagnosed with multiple sclerosis. I was 25. It affected me like a stroke, on the right side of my body. I had never heard of this disease, so it was like an old rodeo injury to me. It took about three years to recover enough to write, sing, and perform again. And there were no assurances that it wouldn’t return. I had always been athletic and healthy. It was shocking for me, and a struggle.

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Yesterday’s Seeds; Today’s Garden!

Posted on May 14, 2025 by MSAA

By Nana Opong-Owusu

They say the habits, values, and choices we’ve planted in our past, shape the garden we stand in today — the decisions we’ve made, the habits we’ve formed, the passions we’ve nurtured, and the values we’ve carried quietly in our hearts. I didn’t appreciate these types of thoughts as a child, but as an adult I oftentimes find myself reflecting.

Growing up, I was always drawn to movement. Sports weren’t just a hobby — they were a way of life. Whether it was the freedom associated with biking around the city with my childhood friends, the camaraderie of my basketball teams, or the adrenaline of soccer tournaments, exercise and movement have always grounded me. Now as an adult, I see it gave me structure, perseverance, and most importantly, a familiarity with pushing through adversity. But alongside that physical drive, I’ve always carried something else: a caring heart. A giving heart.

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Becoming The Person She Needed

Posted on May 12, 2025 by Diana Cruz-Beniquez

If I could sit across from my 13-year-old-self right now, I think she’d stare at me wide eyed, somewhere between disbelief and admiration. Not because I’ve “figured it all out,” which I most certainly haven’t, but because I’ve kept and continue to keep going, even when I don’t know how.

I was 13 when I was diagnosed with Autoimmune Lymphoproliferative Syndrome, an extremely rare autoimmune disorder that even many healthcare professionals to this day are confused by. At an age when most kids were worried about what to wear to school or how to pass their next quiz, I was learning how to pronounce the name of my condition and what it meant to live in a body that didn’t always feel like my own. There were many hospital visits and medications accompanied by a laundry list of side effects, and a lifelong experience of learning how to advocate for myself in a room full of doctors that barely know what’s going on in your body. That girl – the one with the IV in her arm and hope in her heart – she had no idea how strong she really was. But she kept going anyway. And I kept going too.

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Looking Back, Moving Forward

Posted on May 5, 2025 by MSAA

By Samuel Fitch

This is my first blog post—so I’m hoping readers will extend a little grace. I’m 44 years old at the time of writing, and lately I’ve been reflecting on the last two decades of my life. One question keeps coming to mind: Would my 24-year-old self be proud of the man I’ve become and the career I’ve chosen?

At 24, I was newly married—Jessica and I had tied the knot in 2003. We were less than a year into marriage, expecting our first child, and I was working full-time at my family’s restaurant. We hadn’t bought our first home yet, but I was riding high on love, youth, and big dreams. At the same time, I was still dealing with some self-destructive habits—drinking, gambling—trying to figure out who I wanted to be as an adult.

Fast forward twenty years, and life has taken some sharp, unexpected turns. Jessica and I have grown stronger together. We’re now parents to four incredible children—three daughters and our youngest, a son. But that early vision I had for my career didn’t quite pan out the way I imagined.

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A Love Letter to My Younger Self

Posted on March 19, 2025 by Emily

By: Emily Carlin

Understanding life with a chronic disease diagnosis is a long-term experience. For me, it took years to come to terms with the fact that I have MS. The journey was not easy but looking back I am proud of myself for how I handled that situation so early in my adulthood.

For some background, I was 23 when I was diagnosed with MS. Unfortunately, I am very familiar with how this condition can impact your life, as some of my family members have lived with MS for many years. To write this piece, I’m going to take you on a little journey with me. Join me as I take you back to the time when I was first diagnosed as I pretend to take myself out for coffee as the 35-year-old woman, wife, and mother I am now.

I asked my younger self out to coffee. She showed up with glowing skin, long hair, vibrant, and full of life. She was also well rested (darn, I was jealous of that, being I’m now a mom of two toddlers). She asked me how my day was going with a cheerful smile. I paused for a second, I looked right in her eyes and told her she was beautiful before I answered. I softly smiled, and told her my day was going well, but I had some things I’d like to share with her.

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Burdens Shared

Posted on March 14, 2025 by MSAA

By Stacie Prada

March is MS awareness month, and it’s a good time to reflect on the lessons I’ve learned while navigating life with multiple sclerosis for 16 years. Of all of the lessons I’ve had to learn, the hardest has been accepting my MS is not just my problem.

When I was diagnosed with MS, I firmly wanted to be able to deal with it myself. I saw it as my problem, and I didn’t want it to affect those around me. I saw it as solely my responsibility, and I thought it would be unfair for me to let it burden anyone else.

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Team MSAA and runDisney Participant Highlight: Ashlei Brown

Posted on September 9, 2024 by Dana Carney

Four years ago, Ashlei Brown ran her first endurance event as part of Team MSAA. The view was about as good as it could get – EPCOT.

In July, Ashlei shared her struggles with a severe MS flare that she experienced in 2020.

“2020 I was in the biggest episode of my life, hardly able to walk. I was stressed about moving my family across state lines from Florida to Tennessee into unfamiliar territory with no extended family to lean on… in the middle of COVID. My MS is completely under control now, thanks to the amazing people at @VUMChealth.

I think it’s time to run again for @MSassociation”

We wanted to hear more about Ashlei’s journey with Team MSAA, and what inspired her to run again at Disney.

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Team MSAA and runDisney Participant Highlight: Tiffany McCahill

Posted on August 15, 2024 by Dana Carney

Completing a 10k endurance event last year wasn’t enough for Team MSAA participant Tiffany McCahill. She’s doing it again, but this time raising the bar and taking on the half marathon!

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