KEEP OUR WAVES MOVING

'A World MS Day Event Turned Into A Movement'
Written by Phoebe Walker

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As the founder of MS Rising and organizer of this year’s inaugural World MS Day event, I can say the results far exceeded my expectations. Before I reflect on the event itself, I invite you to bear with me as I share the origin of the MS Rising movement.

During one of my emotional MS lows, feeling sorry for myself and trapped in a cycle of, “I can’t believe I am still living with this beast and the endless, relentless symptoms that surface at the most inopportune moments,” I questioned whether I had any worthwhile purpose left. It was at this low point that I came across a post from a powerhouse MS Warrior, Adam. Despite having primary progressive MS and being in a wheelchair within five months, Adam was living his best life and helping others. Another friend with MS runs every day and organizes events for fellow MSers. Then I realized that I, too, had exceeded my expectations by learning to ballroom dance, even competing at the national level in high heels. This realization sparked the idea for MS Rising. Others were living their best lives with MS, and I was too. I just needed to step out of my darkness and reach out to others who were also facing MS head-on.


I reflected on my diagnosis 20+ years ago: all the things I wish I’d known, the patient-to-patient resources I wish I’d had. I remembered podcasts and MS magazine articles where I longed to contact success-story interviewees, to ask them my own questions, to know that they were real, and to see that they had found ways to live fully despite the struggles. I wanted to connect, to befriend, and to let them help me out of the darkest places MS can take us, places even my closest loved ones can’t fully understand because they don’t live with MS.


That’s when I knew I was onto something beautiful. I assessed what was available to our community and realized we needed a platform for open discussion, not just with anyone with MS, but specifically with those who could serve as encouragement and living examples of resilience in all circumstances. My goal became to foster an inclusive environment that respects each person’s unique journey, without comparison or judgment. Rather than drawing others into negativity, I wanted a supportive, nonjudgmental space where people could celebrate achievements, share their Wavecrest moments, and find strength through mutual support during wave breaks.


So, I created the MS Rising event to address a critical need: real-time peer connection. What I thought would be solely about connection and inspiration turned into so much more. The true purpose of MS Rising only became clear when I saw the panelists not as individuals, but as a collective. We needed to address and support mental and emotional health while promoting movement and fostering community. Peers helping peers is a critical need. There’s a unique safety in being vulnerable with someone who truly understands. Inspiration goes further when it comes from someone walking the same path as you, facing the same invasive beast.


Reflecting on the event, I’m filled with pride for our entire team. Allié, in particular, was a standout. She effortlessly guided the panel through tough, thought-provoking, and even downright silly questions, helping us tackle some of the “hot topics” of living with MS. I’ve really come to admire her for everything she brings to the table. She’s a bit mysterious, somehow always knowing exactly what’s going on, what needs to be done, and how she can help, often before anyone else realizes it. She doesn’t just anticipate needs; she acts on them. Honestly, I wish I’d had someone like Allié in my life long before this year. I feel truly blessed to have her and AwareNow in my inner circle now.


Jonathan is one of our two panel members with a medical background. He was our psych nurse with MS and our unofficial, non-keynote speaker. While he has had MS for the shortest time out of the group, he left us with a lot to think about when it comes to managing the mental and emotional sides of life with MS. His insights gave us practical ways to handle that part of our journey, with a focus on humor and rest.


One of the most eye-opening and relatable statements for many on the team, and for those watching, was his statement, “One’s perception becomes their reality.” That is one we can all marinate on.
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​Adam shared his experience of powering through even after losing, and then regaining, the use of his legs. It may not look great just yet, but that is his daily focus. I could relate. While I wasn’t diagnosed with paraplegia like Adam, I did lose the ability to stand and had to retrain myself to walk again before ever starting MS medications. Now, keeping my legs moving is a daily, intentional act. Adam is a powerful patient advocate despite his relatively recent diagnosis. This is what makes him a perfect lead for the MS newbie Zoom group that he holds regularly. He will be a strong advocate for anyone who wants to keep going with MS. (MSdwiththewrongMFr)

Cheryl was the person who helped me start moving again during the pandemic, which threatened to steal my mobility for a second time. She was the first MSer to inspire me in a way I could physically connect with. Cheryl’s journey is deeply inspiring, and her compassion is just as impressive. Hearing her share her experiences never gets old, and honestly, the same goes for the entire panel. Cheryl is the founder of Run A Myelin My Shoes (RAMMS), an incredible community of MS runners, walkers, dancers, and anyone who chooses movement. I can’t say enough about how she encouraged me and guided me back onto the right path when giving up seemed easier.

Brian, once a standout football player at the University of Michigan, faced the profound challenge of losing a part of his identity when multiple sclerosis took his job. He shared how he was forced to step back and reinvent himself yet again. Rather than give in to despair, Brian drew inspiration from his struggles and found a renewed purpose: helping others in the MS community.

With a heart of gold, Brian works tirelessly to encourage others living with MS, reminding them to keep doing what they can for as long as possible, and when it’s time to move on, to find the courage to transition to something new. Now, through his MichiganMan64 podcast, he shares powerful stories from people living with MS every week, inspiring listeners to persevere, adapt, and find hope in the face of life’s toughest challenges.

And then there’s Summer, our second panel medical professional. I’m still in awe of her. She was diagnosed with MS just four months before finishing her short white coat period after med school. For those unfamiliar, the long white coat comes after residency. Her MS progressed rapidly, and now she uses an electric wheelchair for work, but switches to her manual chair for fun. She crowd surfs, plays in mosh pits, goes skiing sitting down, and is working on tandem skydiving, all while working full-time as a doctor. For anyone who thinks you can’t have fun from a wheelchair, Summer proves otherwise.

All of these panelists exemplify why we need our community: to remind each other that even with MS, there’s still plenty of fun, and life, to be had. Within two weeks of the event, we reached over 800 individuals through relaxed conversations in a non-sterile, real-life setting filled with inspiring, vulnerable testimony. The raw conversations tugged at my heart, new lifelong friendships were formed, and a community was established. The vision quickly expanded into an evolving initiative, one that grows with the community, providing ongoing support and inspiration to “just keep moving.”

The overwhelming response to the inaugural MS Rising panel is humbling and underscores the need for this community. We now have a blueprint: MS Rising’s annual panel event, with raw, unscripted conversations where questions can be answered honestly. With our Facebook group (https://www.facebook.com/groups/msrising), there is 24/7 access to the community. Come talk about needs, share victories, or lift a peer. I am excited to see how this community will grow and adapt. The depth and power of our community is palpable when we stand together. Let’s join this movement and keep our waves moving forward, together. ∎

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Watch the inaugural MS Rising Panel Discussion: msfocus.us/msrising
Learn more about MS Rising: damms411.org/ms-inaugural-panel