MSA Awareness Shoe
A Journey of Hope Fueled by Love
The Defeat MSA Awareness Shoe isn’t just a symbol; it’s a testament to the power of friendship and the enduring spirit of Pearl Turner. What began as a playful prank among friends has blossomed into a global movement, all in honor of Pearl, who bravely faced Multiple System Atrophy (MSA).
It started with a simple act of mischief: a group of friends playfully “kidnapped” Tim’s shoe while he slept. They created a Facebook page, documenting the shoe’s whimsical travels around the neighborhood, ending up in the strangest of places and in the company of different people. Little did they know, this lighthearted prank would soon take on a profound meaning.
When Pearl’s daughter, Gretchen, shared the Facebook page with her mom, Pearl, battling the devastating effects of MSA, laughed for the first time in months. This moment sparked a realization: this simple act could become a powerful tool for raising awareness about a disease that often goes overlooked.
MSA is a rare and rapidly progressing neurodegenerative disorder, similar to ALS but often more aggressive. It robs individuals of basic bodily functions, impacting blood pressure, heart rate, bladder control, speech, and mobility. Life expectancy is typically 5-10 years, and currently, there is no cure.
After Pearl’s passing, her friends, along with Tim, transformed the prank into a mission. They created the MSA Awareness Shoe to honor Pearl’s memory and to illuminate the realities of MSA. Today, seven official MSA Shoes, each representing a continent, “kick” their way across the globe, visiting iconic landmarks and rubbing shoulders with notable figures.
“Our Shoe,” as it’s affectionately known, has become a conversation starter, a symbol of hope, and a vehicle for change. This extraordinary journey raises vital awareness about MSA, fosters support for patients and caregivers, and raises crucial funds for research.
What is Multiple System Atrophy?
MSA is a rare, rapidly progressive neurodegenerative disorder. MSA impairs the systems that regulate blood pressure, heart rate and bladder – many of the basic bodily functions that people take for granted every day. People with MSA suffer from dangerously low blood pressure, speech and swallowing difficulties, sleep disturbances, breathing problems, rigidity and tremors. The life expectancy for those with MSA is typically five to ten years. Patients with MSA, oftentimes progress to a point in which they are virtually trapped within their own bodies, unable to move and unable to communicate. At present, there is no cure for MSA, no genetic tests to detect it and very few treatments to manage its debilitating effects.
Where Is the MSA Awareness Shoe Now?
Realizing that much of the current attention is focused on more widely known diseases, Multiple System Atrophy is overlooked. MSA patients are confronted with a dim prognosis and left with few options. Defeat MSA aims to increase AWARENESS, help ALLEVIATE suffering and ADVANCE research toward the cure for MSA!
Remember Our Angels
Thousands of people have around the world have lost loved ones to Multiple System Atrophy. Kerry Glen Simon (June 17, 1955 – September 11, 2015) was an American celebrity chef, Iron Chef winner and restaurateur based in Las Vegas. The MSA community will always remember Kerry fondly. He was a gentle, talented and passionate individual and will continue to be greatly missed. Kerry was a heroic witness to the tragedy of MSA. We are indebted to him for his efforts to raise awareness, crucial research funds and for giving a public voice to our cause.
Forms to Use the Shoe with Your Fundraiser
Please download and send completed forms to: defeatmsa@gmail.com
MSA Shoe Hosting Agreement (PDF)
JOIN THE MOVEMENT