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

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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.


Protect Your Family from the Flu

10 Dec

This National Influenza Vaccination Week (December 6-12), we want to remind all parents to make sure their family members – everyone 6 months and up – get their flu vaccine.

As an organization comprised of meningitis survivors and families who have lost loved ones to a vaccine-preventable disease, we know how important prevention is.

Although most people who get the flu will recover in less than two weeks, some may develop life-threatening complications. Each year, 5 to 20 percent of people in the U.S. get the flu. More than 200,000 people are hospitalized and 3,000 to 49,000 deaths occur. Last year alone, there were 147 pediatric deaths associated with the flu.

Families Fighting Flu is an advocacy organization dedicated to raising awareness about the seriousness of flu and the importance of vaccination. The organization includes families whose children have suffered serious medical complications or died from influenza.

This NIVW, we want to share the perspectives of these families with you:

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With these stories in mind, NMA urges everyone 6 months and up to get a flu vaccine – protect yourself and your family.

Q&A: Meningitis Vaccines for A, C, W, Y & B

17 Nov

We wrote about the new serogroup B vaccine recommendation when CDC’s Advisory Committee on Immunization Practices (ACIP) voted on it in June.

On October 23, 2015, the Centers for Disease Control and Prevention approved and published the recommendation for permissive use of serogroup B meningococcal vaccine for adolescents at age 16-23, with a preferred age of 16-18. This made the recommendation official.

The meningococcal vaccine for A, C, W and Y is recommended at age 11-12 with a booster at 16 and is part of the routine vaccination schedule. The B vaccine is recommended permissively, meaning that parents have a larger responsibility to seek and request the vaccine. That’s why it’s so important for parents to speak with their child’s healthcare provider to make sure their child is fully vaccinated against the disease.

To make the vaccination process clearer and easier for everyone who wants to be fully protected, especially given this new recommendation, we have answered some common questions about meningococcal vaccination below.

Q: Can my teen receive the serogroup B vaccine during the same visit as the A, C, W and Y vaccine?

A: Yes, your teen can be vaccinated against serogroup B during the same visit as the quadrivalent vaccine, preferably in different arms. Fortunately teens can receive the quadrivalent vaccine and start the serogroup B series of shots at one visit at the age of 16. The serogroup B vaccines require either two or three doses.

Q: What can I do if my doctor doesn’t stock the serogroup B vaccine?

A: Because the serogroup B vaccine is still very new, some doctors may not have it in their offices yet. You can ask your doctor to order the vaccine. Otherwise, college health centers, pharmacies and/or travel clinics may have it in stock. Another way to locate vaccine providers who carry serogroup B vaccines is by using the HealthMap Vaccine Finder:

Q: Why isn’t the serogroup B vaccine recommended the same way the quadrivalent vaccine is?

A: Serogroup B meningococcal disease is very rare, and because the vaccines are new, we don’t know exactly how long their protection will last or if they will protect against every case of serogroup B disease. That being said, it is possible that the CDC will reconsider a routine recommendation in the future. NMA will continue to advocate for broader recommendation for the serogroup B vaccine.

Q: Does insurance cover the serogroup B vaccine?

A: Health plans will be required to cover serogroup B meningococcal disease vaccines beginning October 23, 2016, but many insurers will begin covering the vaccines before that date.

Note: The Vaccines for Children program (VFC) will provide vaccines at no cost to children who might not be vaccinated due to an inability to pay. VFC will cover the cost of the serogroup B vaccine for children ages 16 through 18 years old, or who are 10 through 18 years old and are identified at being at increased risk of developing meningitis B.