Promoting Awareness

The mission of NEVER STOP NEVER QUIT is to raise funds, support treatment, and promote awareness in the fight against multiple sclerosis.

For about 2 months each year, I focus my sights on fundraising. It is a necessary tenet for the next part of my mission: supporting treatment, both disease-modifying and rehabilitative therapies. Treatments will save lives; money is needed to develop and enhance treatments. Both remain essential, but they are no longer forces that pull me from my bed and drive every action I take. Promoting awareness is my strategic communication volley, designed to shift behaviors, educate the public, and inspire action.

This past September, I began flooding my social media with clips and pictures documenting my life battling the debilitating effects of multiple sclerosis. I scold myself with words like Boring, Irrelevant, Embarrassing, and Repetitive, as I question the need to share every dirty little secret. In the past, others used those same words to challenge my need to post such details. “You don’t need to share all your issues,” they’d say. “Some things should remain private.”

Those Dirty Little Secrets Are Shifting Behaviors

The thought that airing my dirty multiple sclerosis laundry would be embarrassing or unpleasant is exactly why I need to continue. The disease inflicts its barrage of symptoms upon each person in a unique way, but most individual symptoms are common across the entire MS community.

When I talk in graphic detail about some of my bladder problems, a few viewers get it. There is an instant connection. My words soften the loneliness and isolation of MS by changing “no one understands…” to “yeah, I’m right there with you….” I received a direct message a week after one of my posts: “I got an orange urine bottle just like yours. It is a lifesaver!” That one made me smile. I’m okay with public embarrassment to reach those few.

Stories of times I fell into despair span my years of sharing. When my life centered on three things (work, alcohol, and fighting suicidal ideation), I was often alone. I didn’t know how to search for others fighting the same challenges and trying to find peace. Things should be different… If my posts make it through to your social media feed, you don’t need to find that needle in a haystack: someone who was/is going through similar challenges. I will share my flaws, my scars, not because I am proud of them. I do not think it is normal, but I know it is common. Like an alcoholic who has remained sober for 4094 days, my story is one of hope for a man who will never find his cure, but who will make every day matter!

Like the disease itself, my disclosures are a shotgun blast of sporadic prompts. I post messages about my bowel and bladder issues. Pictures I share include horrific cuts and scalding burns from accidents around the household. My disfigured body becomes the embodiment of “these are the debilitating effects of multiple sclerosis.” No person should feel isolated or ashamed because of their unique issues. My messages reinforce that sentiment.

Personal Disclosure Educates the Public

To the viewers outside of our MS community, I will not attempt to ease your comfort level regarding the disease. In absolutely no way is multiple sclerosis normal. It is an uncaring, draining shit show that never yields on its threats to destroy the lives of those inflicted and everyone around them. I am not trying to normalize MS but rather humanize those fighting the disease.

Here’s a recent example. Rather than focusing on the scientific aspects of disease progression and treatments (I leave that to the experts), I shared the elation of my “Easy Day” when I got to sit in the hospital for six hours with a needle in my arm. It was easy because I did not have another anaphylactic reaction or develop a staph infection again. I was not hospitalized for meningitis, suffered severe intestinal distress, or planned to spend the next three days bouncing off the walls, coming down from Solu-Medrol. I returned to my normal day of living, living as a regular person who suffers from a debilitating disease.

I don’t look for pity, but I will never pretend that nothing is wrong. When you look at my videos, when you check out my pictures on my blog posts, please remember that the nightmares of my experiences are not normal. They are the horrific result of my disease. They do not define me as a human, father, son, brother, family member, friend, loved one, author, nonprofit activist, or random blogger of offbeat videos and pictures. My actions drive those claims.

Inspiration: The Goal That Brings Us Back to the Start

My first reaction was to strip away the selfish reasons for sharing my stories. In retrospect, I realized how the therapeutic value I receive by unleashing my burdens is a textbook example of Supporting Treatment. Benefits from my self-care are an equal part of my media journey. A good day at the gym leads to a motivational video post or cartoon meme. Gratitude, thanks, and celebrations are common themes in my fight against the debilitating effects of multiple sclerosis. Every post I share about my monthly Garage Dayz 100-mile ride is a thin layer of pain and struggle, overshadowed by motivation, endurance, and celebration. Inspiration through example.

Mental and emotional therapies are essential components of the treatments needed to fight MS. Inspiring posts about my own successes have the chance to help others in their search for stability. I vow to make myself available to aid and assist; others often take me up on that offer. I will always be there for your fight.

As a PoNS Device® ambassador, I documented my treatment journey. Insurance would not cover the treatment, nor did the Department of Veterans Affairs authorize it, so I paid out of my own pocket. Gains from my use of the device, in coordination with intensive rehabilitation, became evident throughout the 14-week protocol. Promoting awareness of my success helped advance this therapy. Video journals and my testimonial are now part of Bioness Medical marketing (Witness Captain Byrne’s Progress Before and After PoNS Therapy). Approval of device access for veterans is an accomplishment I am proud to have helped secure.

Physical Therapies – Disease Modifying Therapies – Mental and Emotional Therapies

My messages support treatments, as well as the need for an individual’s cautious, well-informed approach. Benefits, side effects, and the all-too-familiar “It did nothing for me” are stressed throughout my incessant sharing.

Necesse est facere sumptum, qui quaerit lucrum (Wikiquote)

I love my high school Latin!

Written around 210 BC, by the Roman playwright Titus Maccius Plautus, the general translation is “It takes money to make money.”

Let me expand on that…

It takes money to support treatment. It takes money to develop and advance new treatments.

Promoting awareness provides education and inspiration that help shift behaviors and support treatment. I live in that sentiment every day of my life. Sometime around the end of September, I will launch my 2026 campaign to raise money in support of our fight. The funny part is that it is often the most visible part of my direct interaction with our supporters. My videos are nothing more than me screaming into an iPhone; my words and images constructed in solitude. The void of social media is my confidant. My darkest years, greatest embarrassments, and biggest achievements are sent to everyone, yet no one in particular. I tried to make my fundraising messages personal, emphasizing the connection I share with each individual.

Since 2003, my efforts to promote awareness by shifting behaviors, educating the public, and inspiring action have helped raise $902,044.82.

Until late September comes, my blogs, quips, videos, and means are the reminder that I will never stop and I will never quit.

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight for them!

 

Never Stop… Never Quit…^®

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