NMA Advocates

NMA has 114 advocates across the country, and 38 video stories.

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Casey-Mahlon

Casey Mahlon

Tennessee

T.E.A.M. member (survived at age 17 years)

Casey was a senior in high school when she developed a fever and a rash all over her body. Her mother drove her to the ER, where she was initially misdiagnosed with hand, foot and mouth disease and sent home. The next day, still in serious pain, but also vomiting and with a severe headache, Casey went to her doctor. After treating her pain, he called an ambulance. Casey woke up five days later, diagnosed with serogroup B meningococcal disease. She experienced brain swelling resulting in scarring that caused long-term neurological complications.

Casey had been vaccinated against meningococcal disease. Unfortunately, vaccines available at the time covered most strains of the disease, but did not cover serogroup B disease. Currently recommended vaccines protect against serogroups A, C, W and Y and there is now a vaccine available for serogroup B. Today, Casey works in digital marketing. She wants to increase awareness of meningitis and its prevention.

The-Boyles

Eilleen and John Boyle

New York

Parents of Caitlin (age 19 years)

Caitlin Boyle

Eilleen and John’s daughter, Caitlin, was a 19-year-old college student when she began feeling ill. She had a headache and neck pain, but they thought Caitlin couldn’t have meningitis because she had been vaccinated. Within hours, Caitlin was on a respirator, and after two days in a coma, she passed away from serogroup B meningococcal disease.

Eilleen and John didn’t know that, even though Caitlin was vaccinated, she wasn’t protected against all of the strains of meningococcal disease. At that time, there was no vaccine to prevent serogroup B disease. They were pleased when, in October 2014, the FDA approved the first serogroup B meningococcal vaccine in the U.S. They work with NMA to educate other families about meningitis symptoms and prevention.

Lisa-Benatar

Lisa Benatar

California

M.O.M. of Emily (age 19 years)

Emily Benatar

Lisa’s daughter, Emily, was a smart, fun-loving freshman at Washington University in St. Louis when she lost her life to serogroup B meningococcal disease. She went to the ER complaining of a pain in her chest and stomach. While there, she vomited so much that she needed IV fluids in order to rehydrate, but was released back to her dorm after midnight. That night, her father flew from California to be with her. The next day, he brought her to the student health center because she had a rash that looked like hives on her stomach, legs and arms. The rash was different from the purple rash most often associated with meningococcemia, so she was sent back to her dorm. An unbearable headache and overall numbness sent Emily back to the ER that night where she was diagnosed with bacterial meningitis. She passed away three weeks later.

Emily had been vaccinated, but vaccines available at the time did not cover serogroup B, which Emily had. Lisa is thankful that available vaccines now cover five major strains of the disease, including serogroup B. Today, she educates others about prevention and works to increase awareness of the signs and symptoms of meningitis to help protect other families from this devastating disease.

ryan-hockensmith

Ryan Hockensmith

Connecticut

T.E.A.M. member (survived at age 21 years)

In the fall of 1999, Ryan Hockensmith was a 21-year-old student at Penn State University studying journalism. At the end of October, he experienced a headache, neck pain and excruciating pain in his feet. Soon after arriving at a local hospital, he was transported by helicopter to Penn State Hershey Medical Center. During that trip, he was placed in a medically induced coma. Ryan was diagnosed with meningococcal meningitis and remained comatose for a week, missing his 22nd birthday. He survived, but his hands and feet were permanently damaged.

Ryan spent a month in the hospital, including a week in rehabilitation, where he learned to walk and use his hands all over again. After enduring multiple toe amputations, he eventually had the front ends of both feet removed. His size-12 foot is now a size-5.

Ryan returned to Penn State University and graduated in 2001. He is now a deputy editor at espnW. He lives in Connecticut with his wife and three daughters, and is dedicated to educating others about meningitis and its prevention.