Susan's Hat and Purple Boot

Patient Leader

Multiple System Atrophy is a rare, fatal, degenerative neurological disease which affects the motor, speech and autonomic systems of the body. Those affected with MSA live 6-10 years. Less than 5 in 100,000 people worldwide have MSA. Like other rare diseases, it is difficult to find doctors and therapists who are knowledgeable about this disease and its progression. Since Multiple System Atrophy is a progressive disease, life is filled with challenges and isolation for patients, caregivers and their families. These challenges lead to frustration, depression and loneliness. Patients and their families desperately look for someone familiar with this disease, someone who understands someone who will give them hope. Many turn to the internet for answers where they find frightening information about MSA but they also find connections to other patients, caregivers and patient families. Most will tell you they experience a sense of relief when they connect with another person who is also on this journey. Through MSA internet communities, gatherings, fundraisers, and awareness events and campaigns are organized. As events were being planned for MSA Awareness Month in 2013, Cathy Rapenport whose husband was diagnosed with MSA in 2012, wanted to create a symbol that would personify MSA. Inspired by Tim’s Shoe, Cathy created Susan’s Hat. Susan’s’ Hat was named in memory of Bob Summers’ wife, Susan, who lost her battle with MSA in 2012. Susan’s Hat debuted March 1, 2013 at an Indiana luncheon with a miniature police badge and schoolhouse pin representing the lives of Marvin Rapenport and Susan Summers. At that luncheon, Susan’s Hat was joined by Purple Boot, created by Melissa Sorg in memory of her mother, Joyce Abner. Together they began a journey to bring hope to MSA patients, their caregivers and families, to generate awareness of Multiple System Atrophy, to educate the public and to aid in generating research funds. At each stop on their journey, tokens representing MSA patients and events attended have been attached to Susan’s Hat. Susan’s Hat has grown heavy under the weight of MSA and the 48 personal tokens, 3 gel bands and 7 calling cards now attached to her. Since March of 2013, Susan’s Hat and Purple Boot: Ambassadors for MSA have journeyed to Ohio, Indiana, Kentucky, Tennessee, Iowa, Arkansas, Georgia, Florida, Arizona, Oklahoma, New Mexico, Texas and Colorado. They have attended fundraisers, races and luncheons in Ohio and Indiana, attended MSA family gatherings in Ohio, Iowa and Georgia, fashion shows in Tennessee, visited the Wedding Dresses Through the Decades at Oakland’s Historic House in Murfreesboro Tn., and a Georgia wedding. They enjoyed town walking tours of Murfreesboro, Tn., Texarkana, Arkansas, and Reynoldsburg, Ohio. They visited schools, neurological clinics, therapy clinics, and family practices. Their visits and journeys have increased MSA awareness with the sharing of educational material and the distribution of over 500 MSA bracelets Most importantly, Susan’s Hat and Purple Boot was honored to share home visits with MSA patients and their families in Arizona, Arkansas, Ohio, Michigan, Kentucky and Tennessee! Their journey carries on as they continue to make home visits, attend MSA gatherings, events and research fundraisers. Their message is one of hope and compassion, “You matter, you are loved and you are not alone!”

Nominations

Health Activist Hero

Bob was caregiver to his wife Susan who was afflcted with the neurodegenerative disorder Multiple System Atrophy. Bob and Susan became very active in spreading awareness about the disease and together they inspired the declaration of March as Multiple System Atrophy Awareness Month in 2010. Susan also chose the color purple to represent this passionate cause for more awareness and research toward a cure. Bob continues the fight as he offers support and comfort to families currently affected and inspires other advocates to do more for the cause, earning him the affectionate name "Coach Bob". Bob has travelled extensively throughout the United States, spreading the word about Multiple System Atrophy to everyone he meets and distributing purple bracelets that say "Miracles for MSA - In God We Trust" and with Susan's initials S.A.S.  — Pam

Susan's Hat and Purple Boot

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