Two Mothers Affected By Meningitis B Launch The Meningitis B Action Project To Put A Stop To The Vaccine-Preventable Disease

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After losing their daughters to Meningitis B, the mothers are joining forces to make sure other parents don’t needlessly suffer the same fate

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"What I didn't know, and what so many parents still don't realize, is that there is a separate strain of meningococcal disease – MenB – that is not covered by the traditional, more widely-known meningitis vaccine,”said Patti Wukovits, co-founder of the Meningitis B Action Project.

The Meningitis B Action Project launched today with a cross-country campaign initiated by two mothers who each lost their young, healthy daughters to Meningitis B five years ago. The Project aims to provide parents and young adults with the information to proactively talk to their healthcare provider about Meningitis B and the vaccine available to help prevent it, and to encourage the medical and education community to inform patients and students about the availability of the Meningitis B vaccine.

Meningococcal disease, one of the most common types of bacterial meningitis, is a life-threatening bacterial infection caused by five types of meningococcal bacteria – A, B, C, W, and Y. It affects all ages, but is more common among 16-23 year olds. Meningitis B accounts for nearly 50% of all meningococcal disease cases among 17-22 year olds in the U.S., and 100% of all meningococcal disease outbreaks on college campuses in the U.S. since 2011. 44 college campuses have reported cases of meningococcal disease since 2013.

Two separate vaccines, MenACWY and MenB, are necessary to be fully immunized against the disease. The MenACWY vaccine is recommended for 11-12 year olds, with a booster shot at 16. The MenB vaccine is suggested for 16-23 year olds, preferably at 16 through 18 years old, and only recently became available in the U.S. in late 2014. However, while most adolescents and young adults have received the MenACWY vaccine, few have received the MenB vaccine largely due to lack of awareness of its availability.

The Project is a joint initiative by Patti Wukovits and Alicia Stillman who each lost their daughters to Meningitis B. High school senior Kimberly Coffey, 17, died a few days before her graduation. College sophomore Emily Stillman, 19, died just 36 hours after her first symptoms. While both had received the MenACWY vaccine, the MenB vaccine was not yet available to help protect them. In 2014, Patti, a registered nurse, and Alicia, an accountant, established their own foundations named after their daughters, The Kimberly Coffey Foundation and The Emily Stillman Foundation. Today, both mothers are joining forces to make sure other parents don’t needlessly suffer the same fate.

“I lost my 17-year-old daughter Kimberly to Meningitis B in 2012, two years before Meningitis B vaccines became available in the U.S. When the doctor in the Emergency Room told me she suspected my daughter had bacterial meningitis, I told the doctor it wasn't possible because she had been vaccinated against meningitis,” said Wukovits. “But what I didn't know, and what so many parents still don't realize, is that there is a separate strain of meningococcal disease – MenB – that is not covered by the traditional, more widely-known meningitis vaccine.”

“If I didn’t know, I’m sure other people don’t know. I said to her that day, I’m going to figure this out. By educating both parents and students on Meningitis B, its symptoms, and the vaccine to help stop it, we have the ability to save other young people from this deadly, but preventable disease,” said Stillman.

As part of the Project, Wukovits and Stillman will travel the country to share their stories across communities, schools and college campuses. Educational resources and tools, including a full action kit, and educational brochure, posters, and shareable videos and graphics, are available for download on the Project’s website to help individuals and organizations spread the word.

“We realize that if we want everyone to hear this critical message about Meningitis B, we can’t do it alone. Through the Meningitis B Action Project, our hope is that we will be able to build an army of advocates to help us spread our message as broadly as possible,” said Wukovits.

To get involved and learn more about the Meningitis B Action Project, visit meningitisbactionproject.org.

About the Meningitis B Action Project

The Meningitis B Action Project is a joint initiative by two mothers who each lost their young, healthy daughters too soon to a now vaccine-preventable disease, Meningitis B. The project aims to arm parents and young adults with the information to proactively talk to their healthcare provider about Meningitis B and the vaccine available to help prevent it, and to encourage the medical community, and school, college and university administrators to inform patients and students about the availability of the Meningitis B vaccine. Learn more at meningitisbactionproject.org.

(1) Pinto VB, Burden R, Wagner A, Moran EE, Lee C. The Development of an Experimental Multiple Serogroups Vaccine for Neisseria meningitidis. PLoS ONE. 2013; 8(11): 1-10
(2) Age as a Risk Factor. Centers for Disease Control and Prevention. https://www.cdc.gov/meningococcal/about/risk-age.html
(3) Division of Bacterial Diseases, National Center for Immunization and Respiratory Diseases, CDC, unpublished data, 2013
(4) Epidemic Intelligence Service, CDC
(5) Meningococcal Disease on U.S. College Campuses, 2013-2017, 2017 National Meningitis Association. http://www.nmaus.org/wp-content/uploads/2017/01/College-Cases-Map.pdf.
(6) Meningococcal Vaccination: What Everyone Should Know. Centers for Disease Control and Prevention. https://www.cdc.gov/vaccines/vpd/mening/public/index.html.

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