Protection, risks, and lessons learned the hard way: why parents need to know about meningitis

11 Jan

By Robbin Thibodeaux

My son Thomas had been sick with flu-like symptoms all week. When I had not heard back from him, I knew something was wrong. His father called to tell me he was admitted into the hospital. By the time I reached the hospital, Thomas was in a coma. He passed away Christmas morning.

Thomas was just 19. A healthy college freshman and a passionate surfer, he was full of life and kind-hearted, with a sense of humor that could make an entire room laugh. His family and friends meant the world to him, and he to us.

It’s hard knowing the disease that took Thomas’ life – meningococcal disease – might have been prevented if I’d only known that there was a vaccine.

I am concerned about the impact that the pandemic is having on vaccination rates. Many families have skipped or postponed annual checkups – and as a result, children have missed out on their scheduled vaccines, potentially increasing the danger of other deadly diseases. Pediatric vaccination rates have dropped more than 40% in California since March.

Parents of teens, in particular, should be aware of the risks of meningitis. Meningococcal disease may be rare, but it’s a serious bacterial infection that can be deadly. Anyone can get meningitis, but teens and young adults are at increased risk. When the infection sets in, it can progress rapidly, claiming a life in as little as one day. Even with treatment, up to 15% of those who catch it will die; 1 in 5 who survive will live with permanent disabilities. The consequences can include hearing loss, brain damage, kidney damage, or amputations.

Meningococcal disease spreads through respiratory and throat secretions, like coughing or kissing, so it’s clear teens and young adults are at heightened risk. Living in close quarters, as they do in camp cabins, in dorms, or in military barracks, increases their chance of spreading it. Crowded social situations can increase risk as well.

Fortunately, meningococcal disease can be effectively prevented with a simple vaccination regimen. The Centers for Disease Control and Prevention (CDC) recommends the first dose of the MenACWY vaccine at age 11-12, with a second dose at age 16. The CDC also recommends that parents discuss the Meningitis B vaccine with their child’s doctor, as the B strain has caused recent outbreaks on college campuses. Unfortunately, many don’t even know about the MenB vaccine.

Today, I work closely with the National Meningitis Association to make sure families know about meningococcal disease. Even before the pandemic, as many as half of all teens were missing the critical second dose of the MenACWY vaccine. This second dose is so important because it helps ensure that the protection kids receive after the first dose at 11-12 doesn’t wear off.

With many parents continuing to cancel or postpone their kids’ well-visits, adolescents are also going without other essential vaccines. HPV, Tdap and flu vaccines are all vital in helping them stay healthy. The drop in vaccination throughout the country this year is immensely concerning, and it would be disastrous to see an increase in vaccine-preventable diseases as a result. I strongly encourage all parents to speak to their child’s doctor to make sure their child is up-to-date on all recommended vaccinations.   

Now more than ever, we understand the value of preventing diseases like meningitis. Even as teens are finding their own social circles and testing their independence, they still need care from the people who raise them. They need protection that goes with them as they grow.

For more information, talk to your child’s health care provider and visit and

Reflections from a mother and son: Helping other families spot the danger that took ours by surprise

18 Nov

By Paige Kach and John Kach

Paige’s story: a mother’s fears.

Everything was going so well right up until our nightmare started. It was the spring of my son John’s first year of college, and with basketball practices, schoolwork, and an active social circle, his life was full. That all came to a halt one Friday night when, without warning, his fever spiked to 105 and he was rushed to a hospital. I got the call from an ER physician: my perfectly healthy son had contracted a rare and often fatal form of bacterial meningitis – meningococcal disease. His organs were shutting down. Doctors induced a coma and worked to save his life. For the next six weeks, my husband and I stayed in the hospital waiting room, desperate to do anything to protect John.

Because that’s what parents do – protect their children. As parents have taken steps to protect their families during the pandemic, today’s kids are missing out on many of the experiences that are part of a healthy childhood.

Many families have also skipped or postponed annual checkups and other doctor’s appointments – and as a result, children nationwide have missed out on their scheduled vaccines, potentially increasing the danger of other deadly diseases. In fact, pediatric vaccination rates have dropped nearly 40% in Florida since March due to the COVID-19 pandemic.

Parents of teens in should be aware of the risks of meningitis. Meningococcal disease, which includes meningococcal meningitis and meningococcemia, is a rare but potentially deadly bacterial infection. Anyone can get these diseases, but teens and young adults are at increased risk for infection. When the infection sets in, it can progress rapidly, claiming or forever changing a life in as little as one day. Even with treatment, up to 15% of those who catch it will die; 1 in 5 who survive will live with permanent disabilities afterwards. The consequences can include hearing loss, brain damage, kidney damage, or amputations – like the ones John suffered, losing parts of both hands and both his legs below the knee.

Meningococcal disease spreads through respiratory and throat secretions, like coughing or kissing – it is easy to see why teens and young adults are at heightened risk. They gather in close quarters, like on school trips, in camp cabins, in dorms or small apartments, or in military barracks, and gather in crowded settings, where the risk of transmission can be higher. While we don’t know how social distancing guidelines will change over the coming months, we do know that these typical adolescent behaviors will eventually start up again.

Fortunately, meningococcal disease can be effectively prevented with a simple vaccination regimen – the Centers for Disease Control and Prevention (CDC) recommends that the first dose of the MenACWY vaccine be given at age 11-12, with a second dose at age 16 to provide robust protection during teen and young adult years. The CDC also recommends that parents discuss the Meningitis B vaccine with their child’s healthcare provider, as the B strain has caused recent outbreaks on college campuses.

John’s story: A son on a mission.

When I woke up from that coma, I didn’t have much sense of what had happened to me – the story came together in pieces. Even as I was learning the toll the infection had taken on my body, I was more upset to see how much emotional strain it had put on my family. I did all I could to tell them I was going to be okay. It was a promise I was making to them. Every day, when I was doing the work to heal and recover, I was driven by that promise. I knew they needed me to be as healthy as possible, and after all they had done for me, I wanted to do that for them. I’d had enough of being the son they worried about. I wanted to be the son they smiled about again.

For 20 years now, I have lived with the consequences of meningococcal meningitis. On top of the impact it has had on me – losing my legs and fingers, about 15 surgeries, many severe blood clots, arthritis, a kidney transplant – I see how it devastates whole families. I still try to protect my own parents from those effects. When I found out I needed that kidney transplant, I avoided telling my parents for months because I didn’t want the news to interfere with a dream trip for my mom. Of course, once they got back and heard I needed a kidney, my mother donated one of hers.

As I was doing the work to recover, I also made a commitment to share my story. I trained to become an advocate for the National Meningitis Association (NMA). My mom and I both work with the NMA to make sure families understand the risks of meningococcal disease – because too many kids are not protected.

Even before the pandemic, it was just too common for teens to miss the critical second dose of the MenACWY vaccine; as many as half did not receive it. That second dose is important to give 16-year-olds a better chance at being protected from this potentially deadly disease. It will protect them now, and it will continue to do so when life begins to return to normal. I also hope that parents and their teens will ask their health care provider about MenB vaccination when they get that second dose of MenACWY.

The success of vaccines has made it easy for us to not think about devastating diseases that would otherwise sicken and even kill healthy teens. Through my work with NMA I’ve learned about other vaccines adolescents need to help them from other diseases, including Tdap, HPV and, for everyone, an annual flu vaccine. Hopefully my experience will encourage parents to call their child ‘s doctor to make sure they are up to date on all their vaccines.  These conversations could potentially save lives.

Before I went away to college, my doctor recommended that I get vaccinated for meningitis when I got to campus. Between schoolwork, sports and my social life, I never got around to it – and I paid a hefty price. Please, talk to your child’s doctor about all of the vaccines they need at age 16. Even as adolescents are stepping into adulthood and meeting major milestones like living away from home, they still need their parents and caregivers to look out for their health.

Visit or for more information.

Ben Diamond: Why Meningitis Advocacy Matters to Me

5 Feb

Interviewed by Mike LaForgia

From left to right; Ben Diamond and Mike LaForgia

For this edition of Parents Who Protect, we’re featuring an interview between Mike LaForgia, meningitis survivor and vaccination advocate, and his friend Ben Diamond. Since surviving the disease more than 15 years ago, Mike has spoken to state legislatures, media organizations and parent groups about the importance of vaccination and meningitis prevention. Mike, a double-amputee, is a long-time runner who has not let meningitis stop him – He is a multi-year finisher of the New York City Marathon and continues to race in his spare time.  

Mike LaForgia: Do you remember how we first got connected? 

Ben Diamond: Oh yes. That was back about eight years ago when my wife Sara and I joined a running group that some friends of ours started in the neighborhood. Lori, one of the women in that group, sat next to you back when you worked at Chase in New York. I remember one day she told us she had recruited a guy from her office who was interested in running with us.

ML: Had you ever encountered meningitis before meeting me?

BD: Unfortunately, I had. There was a string of cases on Long Island in the late 1980s and the sister of one of my good friends from high school ended up passing away from the disease. Separately, about 15 years ago, the mother of another friend contracted bacterial meningitis. Vaccines weren’t as widely available, and most people weren’t aware a vaccine even existed, but I’m so glad that’s changed.

ML: When did you learn about my experience with meningitis? 

BD: Lori had told us a little bit about your battle with meningitis before we first met, and she shared how it had affected you. She told us that you were a double-amputee and that you were still a runner, which so impressed me.

On our first run together, you told me your family didn’t know what it was when you first got symptoms, thought it was the flu, and how you all rushed back from vacation and straight to the hospital. And then of course I heard you tell the story many times after that! It wasn’t long before I learned about all the advocacy work you do – as a National Meningitis Association advocate, speaking to PTA groups and in schools about the importance of vaccination for those at greatest risk, meeting with parents and survivors. For as long as I’ve known you, it’s always been clear that meningitis advocacy is such an important part of your life.

ML: You ran over 1,000 miles in 2018 and ended up raising over $2,000 for the National Meningitis Association. What made you decide to do that? 

BD: I’ve always been a goal-oriented person. I surpassed my goal of running 1,000 miles in 2017, but for 2018 I wanted to build on that. To be honest, I really miss you since you’ve moved from New York to Texas and running to raise money for the group that you’re so passionate about seemed like a cool idea. The part that was most surprising to me – in a good way – was how much support I got. A lot of people get nervous about asking others for money, but I just put it out there on Facebook and was overwhelmed by the number of messages and comments from people who wanted to help. It was also extra motivation for me because I’d look pretty silly if I’d declared this goal so publicly and then didn’t stick to it.

Mike LaForgia

ML: What was it like once you started running this year? 

BD: It was such a motivation to know that each time I ran meant a few more dollars for the NMA. A bunch of my friends and family chose to sponsor around 10 cents per mile, so if I went out and did a four-mile run on a Saturday morning that could be seven or 10 dollars right there. The beauty of this plan was every mile increased the donation to the NMA and led to direct improvement in vaccination awareness.  As you said yourself, every mile meant a greater and greater chance I and all those that supported me saved lives.  I sent out at email at the end of the year with how much I’d run, and people emailed me back a few days later to say they’d made their donation through the NMA website.

ML: Beyond money, what do you hope can come from your NMA running campaign? 

BD: Really, I just want to reach as many audiences as possible and spread awareness about meningitis prevention. Whether that’s people in my community, Facebook friends from school or healthcare providers, I hope that my advocacy can draw attention to meningitis and encourage more people to make sure their loved ones are protected against this devastating disease. I see everything that you’ve gone through – You have such a positive attitude, but no one should have to overcome the challenges that you and your family have.

Mike and Ben at the finish line at the New York City Marathon, 2013

ML: Have your kids received all of their vaccinations?

BD: My wife and I are vigilant about making sure our kids get all of their vaccinations. The older ones are in their 20s and have already received their meningitis vaccines, but the youngest is 15 so he’s gotten the first dose of the MenACWY vaccine and will be getting the second dose – as well as both doses of the MenB vaccine – once he turns 16.

ML: Think you’ll ever come down for a run in Texas? 

BD: Oh yeah, we have to get that set up! We’ve done literally hundreds of runs together and I continue to be so inspired by you each time we’re out there. I’ll never forget running the New York City Marathon with you in 2013.  You inspired the crowd for the entire 26.2 miles and I was so proud to run next you.  I get that same feeling every time we run together.

Click here to learn more about Mike’s story and click here to make a donation to NMA

Finding the blessings in a parent’s nightmare

15 Aug

By Lori Buher

Lori and Carl

Lori and Carl

August is National Immunization Awareness Month (NIAM). The week of August 19th through the 25th is specifically devoted to raising awareness about the importance of preteen and teen vaccinations. The CDC recommends several vaccines during adolescence and I support all of them – but my focus here is meningococcal prevention.

The CDC recommends vaccination against this disease with the MenACWY vaccine for all children at age 11-12, with a second dose at age 16. The CDC also recommends that healthcare professionals discuss meningitis B vaccine with their 16-year-old patients and their parents. The MenB vaccine, which protects against the B strain of the disease, was not available in 2003, when my son was attacked by this dreadful disease. As a way to mark NIAM and more specifically, Preteen and Teen Vaccination Week, I wanted to tell Carl’s story again.

Though it’s been 15 years since Carl was stricken, the memories of those days and weeks live with us still. For those of you who are not familiar with meningococcal disease, also known as bacterial meningitis, it presents with symptoms that mimic flu.

That is exactly what we thought Carl had come down with 15 years ago. His vomiting, lethargy, body ache, and fever were all symptoms associated with flu. When the distinctive purple rash appeared, we knew it was something different and immediately took him to his doctor.

Tragically, meningitis victims are sometimes misdiagnosed, and death can occur in 24 hours if they don’t receive treatment. Carl’s doctor recognized the rash and immediately called an ambulance to take him to the hospital. By this time, about 18 hours had elapsed since he’d begun vomiting. His organs were shutting down and he was airlifted to Seattle Children’s Hospital. My husband, Curt and I followed in our car. When we arrived, we were met by a hospital social worker who had been called in to help us prepare for Carl’s death.

Carl’s heart stopped three times while he was in the helicopter on the way to Seattle. It stopped again the next morning. But each time, he was revived. He beat the odds and did not die.

We spent the next six months at Children’s Hospital and at Harborview Medical Center. Carl underwent 11 surgeries – including the amputation of both his legs below the knee and three of his fingers. The skin on his arms and legs was destroyed and multiple skin grafting operations were also required.

While we were spending all our time in the hospital, we were inundated with support from our Washington State community.

There were fundraisers to help with the bills, cards, letters and visits to bolster our spirits. Cookies, smoked salmon, and even homemade soup were delivered to the hospital – and the medical staff loved us.

We will never forget the generosity and love given to us during that difficult time and we have hundreds of stories about the kindnesses of friends and strangers alike.

Because Carl was in a wheelchair then, our Victorian home that Curt had restored years earlier was not accessible or adaptable to wheelchair life. We were forced to sell it, and Curt found our new home just days before we were to come home with Carl.

When he was finally able to return to school, it was a slow adjustment for Carl – he took just one class per day at first. His teachers continued to visit him at home, as they had visited him in the hospital. Despite losing so many months of school, he caught up with his class.

Over his high school years, Carl endured more surgeries, rehabilitation, and healing – and he also learned how to use his prosthetic legs.

No one was prouder of him than the staff, students, and families of La Conner High when he walked across the stage as co-valedictorian on graduation night.

Carl went on to attend and graduate from Gonzaga University. He is currently employed as a civil engineer and married to Anna Sullivan, whom he met his first day at Gonzaga. We are so lucky that he survived and thrived, but it could easily have gone the other way. Before this happened to us, I could never have imagined anything so frightening.

Now I am a prevention advocate and serve on the Board of the National Meningitis Association. I encourage everyone to make sure to stay up-to-date with all of their vaccines and make sure that their pre-teen and older adolescent children get all their doses of both types of meningococcal vaccines so that other families don’t have to endure what we went through.

On World Meningitis Day, National Meningitis Association President Reflects on 20 Years

24 Apr

Lynn Bozof Shares Her Story, Highlights Importance of Meningococcal Vaccination

April 24, 2018

April 20, 1998, is a day my family will never forget nor ever get over.  It was the day our 20-year-old son, Evan, lost his 26-day battle with meningococcal meningitis.  On March 26, 1998, the day Evan was diagnosed, we knew nothing about meningococcal disease, other than that it was something that happened to other people.

That March 26 was a dreary, still wintry day.   When we returned home after Evan’s funeral, weeks later in April, everything looked different.  The trees and flowers had bloomed – brilliant pinks and yellows.  How could the world look so pretty when my heart was so devastated? Those images have stuck with me for 20 years.

Losing our son irrevocably changed our lives. Now, every day is cast in his shadow. One of my brightest sources of light has been keeping Evan’s memory alive by encouraging families and young people to learn about and protect themselves against meningococcal meningitis.

When Evan got sick, we drove three hours to his university, not knowing if he would be alive when we got there.  Those were the days before we had cell phones.  We stopped midway to check on him.  The hospital told us it was very critical.  When we first saw Evan in an oxygen tent, Evan told my husband it took every ounce of energy he had to roll over.

Each of those 26 days when Evan was in the hospital came with its own nightmare, but there are a few that stand out more than others.  My younger son, Ryan, asked me if there was life after death – this was after we had been told that Evan had a 1% chance of survival.  I was trying to absorb what the doctors are saying, while at the same time choosing words to comfort my younger son.

Then there was the night that Evan came out of sedation, unexpectedly, and saw his arms and legs black and charred from gangrene.  No one thought he had the strength to lift himself up.  Evan was intubated, so he couldn’t talk to us, but we could see the terror in his eyes.  He went into a panic attack, with his fever spiking and all numbers out of whack.  A wonderful neurologist came in and talked to Evan, told him he had almost died but would be okay.  After that, the sedation was increased so Evan would not wake up unexpectedly.

Then the day of the amputations – the nurse coming into the waiting room four times, after each limb was amputated, and finally the neurologist telling us Evan was brain dead.

During this time, we learned that a vaccine was available that could have saved his life – if only we had we known about it, if only there had there been routine recommendations handed down from the CDC to physicians to families and teenagers.  But in 1998, there were no such recommendations.  The only young adults getting vaccinated were military recruits who lived in barracks; teenagers like Evan, living in college dorms (like barracks in many ways), remained unprotected. We were stunned and heartbroken that we’d never been told about the vaccine.

At that point my family decided that if we didn’t know about the vaccine, there were so many other families who did not know as well.  We made it our mission to educate others about meningococcal disease and its prevention, and thus the National Meningitis Association (NMA) was born. We have come so far, but there is still much to be done.

These days, the quadrivalent meningococcal vaccine (MenACWY) is strongly recommended by the CDC for age 11-12 and again at 16. Many schools will not allow students to come to class unless they provide proof they were vaccinated. Even more recently, the MenB vaccine, which protects against a fifth strain of bacteria that has caused most college cases and all college outbreaks in recent years, has become available. The CDC doesn’t include MenB in its highest level of recommendation but urges young people and their parents to talk to a healthcare professional about it. (The NMA advocates for a stronger recommendation on MenB and continues to raise awareness of the vaccine.)

Despite relatively greater awareness and availability of meningococcal vaccines, many people still don’t know anything about meningococcal meningitis. If they do, it’s likely they’re like I was – blissfully oblivious, only assuming it’s a disease that happens to other people. Many of those who need the meningococcal vaccines are adolescents and young adults headed to college.  They may feel invincible. Although this disease is rare, it is deadly, and if you haven’t been vaccinated it does not discriminate.

As I approach this 20-year anniversary, I am still devastated and always will be.  You can’t lose a child and feel otherwise.  I hope the NMA’s efforts have saved lives, so that Evan didn’t die in vain.

Evan once said to me when he was younger, that he wished he were a tree, because trees don’t die.  Evan – you weren’t a tree, you were a beautiful, terribly missed son and brother.  You will always be alive in our hearts.

This March Madness – Take Both Shots

17 Mar

Each year many Americans start their spring by turning their attention to the March Madness basketball tournament. Unfortunately, for many of National Meningitis Association’s (NMA) Moms on Meningitis (M.O.M.) and Together Educating About Meningitis (T.E.A.M.) members, March is a time when we remember those we lost to meningococcal disease. In fact, while meningococcal disease can strike at any time of year, the number of cases peaks in the winter and early spring.[1]

N.M.A. board member, Leslie Maier lost her son Chris on March 2nd

M.O.M. Judy Miller lost her daughter Beth on March 12th

171_NMA_March Madness infogram_3c

The higher incidence of meningococcal disease in March can be seen in the headlines of the last few years. In March 2014, a Drexel University student died after visiting Princeton University, which was nearing the end of an outbreak that impacted eight students. In 2015, the University of Oregon was battling an outbreak of meningococcal disease with two additional cases appearing in March. In 2016, students at both Penn State and Rutgers University were hospitalized with meningococcal disease in March. This year there were cases on three college campuses by mid-March: Wake Forest University, Old Dominion University, and Oregon State University. There has also been an outbreak, at an elementary school in Virginia.

To rise to the challenge of this other recurring “March Madness”, we must increase our efforts to raise awareness of meningococcal disease and its prevention. There are two kinds of vaccines that students need to be protected from meningococcal disease, the MenACWY vaccine and the MenB vaccine.

It’s important that students remain vigilant and be able to recognize the symptoms of meningococcal  disease including headache, fever, stiff neck, and a purplish rash, so that you can promptly seek medical attention.

This March, let’s get on the ball and take “both shots” to prevent the other March Madness.

[1] Centers for Disease Control and Prevention. “Meningococcal Disease” Epidemiology and Prevention of Vaccine-Preventable Diseases. Hamborsky J, Kroger A, Wolfe S, eds. 13th ed. PHF, 2015 (pp. 231-243).


Voting For Vaccine Success

4 Nov

Earlier this year, NMA hosted its first ever panel discussion, “Achieving Childhood Vaccination Success in the US” featuring experts in health, science, law, and ethics addressing a range of topics from vaccine skeptics to physicians straying from the recommended vaccine schedules to the role of the media in shaping beliefs about vaccines – all issues that have come up several times during this election season.


Vaccination education and awareness remain central to NMA’s education and policy efforts. “As a parent whose child died from bacterial meningitis – a vaccine preventable disease – and as a grandmother of three little ones, getting kids vaccinated is an important subject for me,” said Lynn Bozof, President of NMA. “Although, at present, NMA primary focus is on adolescent vaccines, early childhood vaccines lay the framework for vaccine success throughout the lifespan, from infancy to adult immunization.”

“We think about ‘the government’ imposing [vaccine mandates] on us. [But] I’d like to suggest to everyone that the imposition of laws, the passage of these laws was the epitome of American democracy because these are not federal laws enacted by a distant congress in Washington. Each state had to enact a law that was, in effect, no shots, no school… Fifty times, this issue had to come before the American people in a governmental forum at the state level, which is close to the people, and had to be debated in each state [except Nebraska]. So, 99 times, this was debated in a body of our elected representatives and was passed 99 times and was sent then to the governors of those fifty states, who represented the entire spectrum of political thought here in the United States. And those governors all signed. If that’s not the epitome of American democracy, providing legislation for the protection of our children, I don’t know what is. So I think that’s actually a superb example of the people working for the benefit of our children.”

Science stresses the importance of vaccinating as many people as possible to protect the most vulnerable – including those too young or too old to get vaccinated themselves.

Despite the science, powerful anti-vaccine voices still hold sway in many parts of this country. As recent years, have made clear, we need to approach vaccine skepticism aggressively and tactically.

“I don’t think we’re going to win the battle against hesitators and vaccine resistors by facts. The issue becomes one of ethics and you need to have ethics in a couple ways,” said Arthur Caplan, an NYU professor of medical ethics best known for assessing moral issues connected to medical interventions and actions, including vaccination. “Vaccination is almost always about the community. It’s almost always about your neighbors, it’s almost always about protecting the vulnerable, the vulnerable kid, the vulnerable older person, the person who’s immune suppressed … but we make it out like it’s just your choice. That’s very American – we’re individualistic, we’re autonomous … and I didn’t even get to Texas yet. But you’ve gotta stress, I think, that you do this because you’re not a jerk. You don’t put kids at risk, you don’t put other people at risk, you do the right thing, I would add the facts into that ethical commentary that the right thing to do is to be a good member of your community. And you’re not if you don’t vaccinate.”

You can watch the full panel discussion below. Remember to stay informed and vote responsibly this and every election.


I Lost My Legs to Meningitis, But You Don’t Have To

17 Aug

Since March 2016, there has been an ongoing meningococcal disease outbreak in Southern California among men-who-have-sex-with-men or MSM. There have already been 24 cases and two deaths associated with this outbreak. NMA T.E.A.M. member Dell Miller, who survived meningococcal disease in 2015, shared his story with The Advocate to urge other gay and bisexual men to get vaccinated. Below is a sample of his op-ed – which can be read in full here.

Over the past six months, many gay and bisexual men throughout Southern California have heard about “meningococcal disease,” also known as meningitis, for what may be the first time in their lives. They’ve seen billboards urging them to get vaccinated or even heard about some or all of the22 cases that have occurred since March. Sadly, some of those 22 patients may have found out about this disease the same way I did: when they were diagnosed and fighting for their lives in a hospital bed.

I am an HIV-positive gay man and survivor of bacterial meningitis, so I know firsthand how important it is that other gay and bisexual men take every step to protect themselves and their loved ones from this devastating disease, which can be spread through close contact — coughing or kissing — or lengthy contact, especially among people living in the same household.

On January 25, 2015, I was enjoying a warm Southern California day at the beach with my partner, Sam, and our French bulldog, Charlotte. I remember calling my mom to (lightly) boast about how good it felt to be in shorts in the middle of winter while she was home in our native Washington State, keeping a fire going and a snow shovel handy. When we finished our call, I looked at my feet and wiggled my toes in the sand for what I didn’t know would be the last time.

As I sat up, I began to feel ill. At first, I thought it was the flu or maybe even something I had eaten earlier. My partner and I went home so I could get some rest. Even though I could feel myself getting weaker and weaker, it wasn’t until I noticed a dime-size purplish spot on my leg that I began to think this wasn’t ordinary flu.

Sam rushed me to the hospital, and in the waiting room, I watched as more and more purple rash spots appeared on my skin right before my eyes. I showed the receptionist my new breakouts, and I was taken to see the doctors. They immediately hooked me up to multiple IVs and told me I’d have to stay in the hospital for a while. Soon afterward, I was diagnosed with meningococcal disease.

To read more visit:

Give Kids A Shot!

8 Jun

Highlights from our annual gala to help #PreventMeningitis

On May 9, 2016 we gathered NMA families, supporters and immunization advocates in New York City for NMA’s eight annual “Give Kids A Shot!” gala to honor the memories of those we’ve lost to meningococcal disease, as well as the families and survivors who have been affected by this potentially preventable disease.


MC for the night Dr. Paul Offit offering opening remarks (Photo by Kari Otero Photography)

At the same time, we celebrated the advances we have made in increasing awareness about meningococcal disease and its prevention. These strides would not have been possible without the work of many, including our extraordinary honorees:

Health Achievement Award: Paul Lee, MD


T.E.A.M. members Carol and Heather Tufano with Dr. Paul Lee (Photo by Kari Otero Photography)

Dr. Lee has made tremendous contributions to help NMA advance its mission. As a practicing physician, currently at Winthrop-University Hospital, he has seen first-hand the devastating impact of meningococcal disease on young people and their families.

At the Gala he discussed how he came to understand the devastating impact of meningococcal disease and the importance of vaccination.

T.E.A.M. Outstanding Service Award: Carl Buher and Mike LaForgia

outstanding team.jpg

T.E.A.M. members and Outstanding Service Award winners Carl Buher and Mike LaForgia (Photo by Kari Otero Photography)

This year, NMA recognized two T.E.A.M. members with the outstanding service award, each with their own unique story and contributions towards NMA’s mission.

Carl Buher contracted serogroup B meningococcal disease as a 14-year-old freshmen in high school. While it was four years before he could walk again, nothing could stop Carl from making the best of the situation. Carl recently testified in support of broad national recommendations for the serogroup B vaccine and participated in a number of media interviews to educate the public. At the Gala he reflected on the platform that NMA has given him to make a difference. “[NMA] gave me a platform on which to stand and speak out for vaccination and prevention, and has enabled me to make that platform as broad as I can imagine.”

Mike LaForgia was diagnosed with meningococcal disease in 2005 and lost his left foot and right leg below his knee. He never thought he’d run again. But, Mike ran the New York City marathon twice as a double amputee. These races have served as an opportunity to educate others about meningococcal disease and raise funds to support NMA’s mission. During the Gala, Mike described these races: “While I run, I carry those lost to the disease with me and as I pass others, I want them to know this disease is real.” For more than a decade, Mike has shared his story regularly as an inspirational speaker to both encourage those who have faced obstacles like his, and to raise awareness of meningitis and its prevention. As a father, he made sure all his three children were vaccinated and encourages others to make sure their children are fully vaccinated.

 Nancy Ford Springer Inspiration Award: Deion Branch


Deion Branch and NMA President Lynn Bozof. The Deion Branch Foundation supports organizations committed to raising awareness about meningitis, including NMA.

Deion Branch is former New England Patriots wide receiver, a two-time Super Bowl champion and a Super Bowl MVP. At 21 years old, Mr. Branch became a father to twin boys, Deiondre and Deiontey. When Deiondre was one month old, he contracted viral meningitis. The doctors gave him only six months to live, but he survived.  In 2004, Deion founded the Deion Branch Foundation to raise awareness about meningitis. Each year, the Foundation coordinates a fundraising team to participate in the Kentucky Derby Festival Marathon to support organizations including NMA. At the Gala, he expressed gratitude for the mission of NMA and committed to continue the fight to raise awareness.


Award winners Carl Buher, Mike LaForgia. Deion Branch, and Dr. Paul Lee with NMA President Lynn Bozof (Photo by Kari Otero Photography)

Thank you to everyone who helped make this night possible and those who have supported and continue to support our work!


Make the right thing to do, the easy thing to do

26 Feb

The following is adapted from NMA President Lynn Bozof’s testimony at the February 2016 ACIP meeting.

I didn’t originally plan to speak at this week’s meeting of the CDC’s Advisory Council on Immunization Practices (ACIP). There were no votes scheduled about meningococcal vaccines, and by now most members know my story of losing my son, Evan, to meningococcal disease when he was a junior in college.  Lynn Bozof Headshot

However, I have received so many e-mails and phone calls about the difficulty of getting serogroup B vaccines that I felt I had to say something. Especially with the recent serogroup B outbreak at Santa Clara University and case at Yale University.

When the ACIP voted to permissively recommend serogroup B meningococcal vaccination for teens and young adults last year, it seemed like a great start. We thought people who wanted to fully protect their children against all meningococcal strains would simply have to tell their healthcare provider that it was important to them to get the vaccine.

In reality, that’s not the case. I hear from parents on a daily basis that their children’s doctors are unaware of the two different types of vaccines, and even fewer stock the B vaccine, nor do they know where to tell people to get it.

Last week, a parent whose son contracted serogroup B meningitis told me she and her husband had to make a dozen calls to find a healthcare professional to vaccinate their other son against B. One of NMA’s survivors who contracted the disease while in college went to five different places before she was able to get the B vaccine. They were determined. But, at that point, most people would have given up.

Parents want to send their kids off to college fully vaccinated. Making this happen should be an easy, no-brainer.  It’s not. When we have someone who wants to be vaccinated, yet can’t find the vaccine, that’s a bad situation. When you have a doctor or nurse who doesn’t know how to deal with a vaccine request, that’s a bad situation. We need to change this.

NMA urges healthcare providers to either stock serogroup B meningococcal vaccine or to learn where to refer patients who want it. We encourage parents who want to fully vaccinate their children not to give up when trying to locate the vaccines. And finally, we hope the ACIP will review the current recommendations for serogroup B, so that the right thing to do – protecting our children—will be the easy thing to do.