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Protection against meningitis
A Preventable Loss: Fighting for Better Protection Against Meningitis

Released: August 18, 2025

Alicia Stillman
Alicia Stillman, MBA, MPH
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Key Takeaways
  • Meningococcal vaccination requires 2 separate vaccines (MenACWY and MenB)—or the combined MenABCWY vaccine—to ensure patients are as protected as possible, but most colleges and universities require the MenACWY vaccine only.
  • Healthcare providers must clearly communicate the risks of meningitis and offices must be prepared to answer questions knowledgeably—from the receptionist to the physician.

I had never heard the word meningococcal before it changed my life forever. I was just a regular mom—3 kids, a home, a life filled with the usual chaos and love. And then in a matter of hours, everything changed.

My middle daughter, Emily, was a sophomore at a small liberal arts college in Michigan. One night, she called to say she had a headache. She thought she might be coming down with the flu or was simply exhausted after studying late for exams. I told her to take some ibuprofen and get some rest. That was the last conversation I ever had with my daughter.

From Headache to Heartbreak
In the early hours of the next morning, Emily told her roommates her head still hurt and that she wanted to go to the hospital. She walked in on her own, carrying her iPad, a textbook, and her backpack. She was just looking for something to relieve her headache.

I didn’t receive a call until the next morning. Emily was 19, so legally an adult. When the hospital finally contacted me, it told me she had been admitted overnight with bacterial meningitis and was very, very sick.

I was confused. Emily had received the meningitis vaccine before heading off to college. I remember saying to the nurse, “She can’t have bacterial meningitis. She got the shot.” But I didn’t know there were different types—different serogroups—and that the shot she received didn’t cover serogroup B, the strain that would take her life.

By the time I got to the hospital, a two-hour drive away, she was already unconscious. They met me at the door and asked if I wanted them to call clergy. That’s when I knew this wasn’t just a flu or exhaustion. My husband flew home. My other daughter was rushed home from a semester abroad. It was all happening so fast. Too fast.

Doctors performed a craniotomy in a desperate effort to relieve the swelling in her brain, but the damage was irreversible. Emily was declared brain dead the next morning.

On a cold February morning in 2013, I said goodbye to my daughter, surrounded by tubes and machines. I kissed her forehead and whispered that I would figure this out—that I would make sure no other family would feel this pain.

Turning Grief Into Action
Out of my grief, I created the Emily Stillman Foundation, and later, in partnership with another mother who lost her daughter, Patti Wukovits, we began the American Society for Meningitis Prevention, which has since grown to become the leading meningitis advocacy organization in the United States.

Emily’s story is not unique. Meningococcal disease—especially meningitis B (MenB)—affects healthy adolescents and young adults with terrifying speed. It’s transferred easily in this age group through everyday behaviors like sharing drinks, utensils, or even vaping devices. And yet, despite all this, many families remain unaware that there are two separate vaccines needed to be as protected as possible: one for MenACWY, and a separate one for MenB (or the newer combined MenABCWY vaccine, which protects against all 5 serogroups, including serogroup B).

A Call to Protect Every Child
Here’s the tragic irony: since 2011, 100% of college campus outbreaks have been caused by Meningitis B. And still, most colleges only require the MenACWY vaccine. Parents send their children off to school believing they’re protected—just like I did.

We’re working to change that. We speak to students, parents, medical professionals, and policymakers. We push for comprehensive vaccine policies and education. We emphasize that healthcare providers must clearly communicate the risks and importance of comprehensive meningitis vaccination, and offices must be prepared to answer questions knowledgeably—from the receptionist to the physician.

I hope no other mother has to stand in a cold hospital hallway, hearing the word “clergy” and realizing her world is about to shatter. If you could protect your child from a rare, but devastating disease—80% with one shot, or 100% with two—what would you choose?

Emily saved 5 lives through organ donation. Now through her story I hope that she saves many more.

Your Thoughts
To learn more about your role in preventing meningitis infection, join us in person or virtually at a free upcoming symposium with my colleague Patti Wukovits, BSN, RN, AMB-BC and faculty experts Gary S. Marshall, MD, and Jana Shaw, MD, MPH, MS, FAAP, FPIDS.

You will hear the latest data on meningococcal vaccines and recommendations, learn more about risk factors for invasive meningococcal disease, and gain strategies for counseling patients and caregivers on meningococcal vaccines.

You can also share your thoughts, stories, or questions below. Let us work together to close the education gap and protect more young lives.

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