MEG ONE in a MILLION Meghan Bayer is one in a million – literally.


Every day, Bayer, who’s pursuing a Master of Social Work degree online, battles Stiff Person Syndrome (SPS), a neurological disorder with features of an autoimmune disease that causes muscles throughout the body to go into severe spasm with the potential to break bones and dis- locate joints. Approximately one to two in every million people worldwide have the condition, but Bayer’s type – pediatric onset – is even rarer, with only about 20-30 living cases today.


“I have really, really good days; I have okay days; and I have really bad days,” she said. “On those good days, I just live my life and find new ad- ventures. If I have learned anything in the last 10 years, it is that you do not have to be dying to start living.”


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Journey to a Diagnosis Bayer’s diagnostic journey began in August 2012 when she experienced a catastrophic autoim- mune reaction to the HPV vaccine. She spent half of high school and undergraduate years (University of Pittsburgh, B.A. in communication rhetoric with a health sciences concentration and administration of justice minor) in and out of the ICU, traveling to see specialists across the country.


She found Scott Newsome at Johns Hopkins’ Stiff Person Syndrome Center, the only outpatient SPS center in the world, seven years after experiencing her first symptoms. Because of SPS, Bayer relies on a feeding tube, has Type 1 diabetes and uses a wheelchair. She receives a plasma infusion every Friday and doses of chemotherapy every five months.


Tell me I cannot do something,


and I will do it. - Meghan Bayer


“The average time to an accurate diagnosis of SPS is over seven years. More recently, I have met some people that have been diagnosed in a matter of months,” Bayer said. “I think medicine is slowly turning the tide for the better.”


‘I will show you it is possible’ While Bayer began taekwondo in 2007 to combat bullying, it has become a lifestyle. She holds nine World Champion titles in the American Taekwon- do Association and is currently training for her fourth degree black belt, at which point she’ll be considered an expert martial artist. She loves instructing new generations of black belts and serving as a tournament judge.


“Believe me when I say, I get some strange looks when kids realize their highest-ranking judge is in a wheelchair!” Bayer joked.


Speaking of competitions, Bayer recently won the Rare Disease Day research competition hosted by the University of Pennsylvania School of Medicine’s Orphan Diseases Center, which is the first time she presented graduate student research to professionals in the medical and medical-adjacent fields.


“The competition was tough, and I was compet- ing against people with credentials like M.D./ Ph.D. or M.D./M.P.H.,” she said. “It was a surprise, but I’m excited to share my research with the world!”


She takes the same approach with her studies. She appreciates Winthrop’s online M.S.W. pro-


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gram for the strong connections with her class- mates and professors.


“The [program’s motto] ‘Excellence Matters’ really fits this program and this institution,” Bayer said, “because I have always been an overachiever. Tell me I cannot do something, and I will do it. Tell me it is impossible; I will show you it is possible.” With faith and hope in her heart, Bayer started her non- profit Meg’s Miracles last year to raise awareness for SPS and funds for Johns Hopkins’ SPS research, raising more than $6,800. She hopes to double that amount in 2022.


“I draw my strength from my faith in God and His master plan,” she said. “I know that God has called me to live an extraordinary life to glorify His Kingdom, and I hope I can do that by helping to stop this devastating disease for myself and others.”


Learn more about Bayer’s nonprofit and its work by visiting www.megsmiracles.org.


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