B Vaccination before Orientation

20 May

Every case of meningococcal disease is a tragedy, but when a case happens on a college campus, it causes even greater anxiety.

Many of these cases can be prevented by having students vaccinated against meningococcal serogroups A, C, W and Y on schedule at 11-12 with a booster at age 16. But this won’t stop cases of serogroup B.

Four outbreaks and at least 10 isolated cases of serogroup B meningococcal disease have occurred on college campuses since 2013. To get a sense of the true impact of those numbers, here are some first-hand accounts from administrators whose schools were affected:

Mary Ferris, MD, MA, MSEd, Student Health Director at the University of California, Santa Barbara:

(Four cases of serogroup B meningococcal disease occurred in one month at the University of California, Santa Barbara in late 2013. These cases were connected another that occurred on campus seven months earlier.)

“Word travels fast on a college campus. By the morning after the first case we had a line of students waiting for us to open. They wanted a vaccine. Telling people they were not at risk didn’t stop the panic.”

“National news outlets camped out on the campus. There was widespread fear and even panic among students, faculty, staff, and the surrounding city. The local school district initially prohibited our student teachers from their sites, and parents drove in to remove their children from the campus. Our campus child care center asked student volunteers to stay away. Parents demanded that we close the campus, and others did not want their students to come home for Thanksgiving holidays. Our local public health department and CDC had to establish special phone lines to handle the large volume of incoming distress calls.”

“Even ONE CASE in a college setting has major repercussions on the institution, and most colleges will not have the resources to pay for vaccines when the outbreaks occur.”

Peter Johnsen, MD, Director of Medical Services at Princeton University:

(Nine cases of serogroup B meningococcal disease occurred at or were associated with an outbreak at Princeton University from March 2013 through March 2014.)

“Our outbreak was sustained over a longer time than usual. The CDC could only provide us with one example of another university that had experienced a sustained outbreak. That outbreak went on for nearly three years. Other university outbreaks were associated with attack rates on the order of 15 to 25 cases per 100,000. Princeton experienced a rate greater than 130 per 100,000. This was comparable to the attack rate in the meningitis belt in Africa.”

David A. Ruth, PhD, dean of students at Drexel University:

(The last case associated with the Princeton outbreak was in a student from nearby Drexel University. The student had attended a party with Princeton undergraduates.)

“The questions and concerns came from all over the campus. From our faculty and our staff, and in this case, police officers as well, who weren’t sure if they were at risk because they were near the student who was sick. We heard from students, parents, media and the community. So trying to manage the emotions, manage the grief, manage the chaos, manage the sadness, while also managing students, managing parents, managing faculty and staff, managing the media—was— was continually challenging. One of the scariest things was the waiting. We expected another case because of what happened at Princeton. We called a meeting of the sorority that evening to let them know one of their best friends had just died, but also that there’s this cause of concern for meningitis. So as you can imagine, there’s panic and grief in this room full of women who lost their best friend and now are scared to death about their own lives as well.”

All universities where an outbreak occurred held emergency clinics to administer serogroup B vaccines to the campus community to help stop the outbreaks, but the best way to prevent these cases is to make sure all students are #BVaccinated before they step on campus. A routine recommendation for serogroup B vaccine would make that easier.

Even without a recommendation, every student can and should put asking an healthcare provider about the serogroup B meningococcal vaccine on their pre-college checklist:

Right-click to download and share!

Right-click to download and share!


This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

Jean’s Answers

14 May

Earlier this week we shared some perspectives on the often overlooked impact of meningococcal disease on friends and family members. We have one more story that we think everyone should hear.

T.E.A.M. member Amy Aiken was diagnosed with the flu in October 2011. That night, she started seeing spots and knew something was seriously wrong. She called 911 and lost consciousness in the ambulance. Shortly after her arrival in the ER, Amy’s kidneys failed and she was immediately put on dialysis. It turned out that Amy did not have the flu, she had meningococcal disease.

Jean and Amy Aiken

Jean and Amy Aiken

Amy asked her mother Jean, now an NMA M.O.M., four questions in the course of her illness. Questions no one else should ever have to ask, and no parent should have to answer.

Jean says:

The first thing she asked me when I walked into the ICU was— “Did I do the right thing?” By that she meant calling 911. I said, “Oh, absolutely!” It saved her life.

The next question was “Will I get better?” She asked this right after the doctor told me that she probably had an hour to live. But I have faith in an afterlife, and I don’t see death as a bad thing. So I was able to say “Amy, I guarantee you, you will get better.” Either she would live or be in heaven. When I made that guarantee, I literally felt her whole body relax. But I’ve always felt a little guilty. Did I lie to my daughter? It was our last conversation for two months. She was in a coma after that.

While she was in the coma we had to sign the paperwork for her feet to be amputated. The next question—the hot potato question—was how do we answer when she asks, “What happened to my legs?” I thought the doctors would handle that one, but they made it clear they did not want to be the ones to tell her. Amy never actually asked that question. Later she told me she just sensed, more than anything, that her feet weren’t there. She said she couldn’t look down for two weeks. Finally one day, she looked me in the eye, and I looked her back in the eye, and I just—kinda nodded, “Yes, I know, dear. I know they’re not there.”

 And the last question—and this is the one I dreaded the most was, “What made you think I would want to live this way?” I was so thankful that I had an answer when the question came. While she was in a coma, a friend directed me to some videos of survivors. It was amazing to see others who had dealt with amputations and were living. They were happy and I knew there was life after this.

The Aiken’s did not know that meningitis is potentially vaccine-preventable. Even if Amy had been vaccinated, the vaccine available at the time wouldn’t have protected her against serogroup B, which she had. Now Amy and Jean are working to ensure that all teens get A, C, W, Y and #BVaccinated.


This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

A Rare Disease, a Wide Impact

12 May

Approximately 600 – 1,000 people contract meningococcal disease in the U.S. each year. By epidemiological standards it is a rare disease, but that label disguises a much wider ripple effect.

At our January roundtable, NMA advocates spoke not only of the tremendous personal impact of surviving meningitis or of losing a child, but also of the ways one case of meningococcal disease can impact siblings, grandparents, extended family, friends, healthcare providers and community members.

Kyla shared how grateful she was for her sisters who helped care for her and who she knows were deeply affected by her illness: “The family members really suffer. My sisters suffered more than I did. I ended up as a quad amputee with a kidney transplant but they suffered significantly more than I did, especially my twin—she probably has PTSD. She was six months pregnant, had a young son and a husband and she moved her whole family from the Bay Area [San Francisco] to San Diego to take care of me. And then a year later, she donated the kidney that allowed me to get off of daily dialysis.”

Mike reflected on his family’s emotional journey: “A young girl asked me if I could go back and stop what happened to me, would I? My initial reaction is, “Of course,” because you know, to see what my wife went through—two of my three kids still struggle with what they went through. To see my 80-year-old father at the time, the only memory I have around the coma was my father standing over my bed, crying.”

Patti shared how losing her daughter to serogroup B meningitis still affects her relationships: “Since Kim died, I’m not the same wife to my husband. I’m not the same mother to my son. I’m not the same daughter to my parents.”

Sue spoke about the moment she lost her nephew to meningococcal disease, highlighting how the loss can be just as heartbreaking for extended family members: “I didn’t say goodbye to Evan in the hospital. Everyone else went in to say goodbye to him but me. I wanted to remember him as he had been. I should have gone in. And that will stay with me always.”

These stories represent just a fraction of the true reach of meningitis. Maybe you are reading this because you too are one of the many whose life has, in some way, been impacted by meningococcal disease.

Whether you have a personal connection or not, I hope you will join us in preventing this disease from impacting anyone else. Spread the word that all teens need to be vaccinated against serogroups A, C, W, and Y at age 11-12 and again at 16 and everyone should ask their healthcare provider about getting #BVaccinated.


This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

Thank You Nurses!

7 May

From May 6th to May 12th we celebrate some very important people, people who should really be celebrated every day: nurses!

Nurses play a critical role in educating about, treating and preventing meningococcal disease. We are grateful for the many amazing nurses who have cared for us or our families and/or supported our mission.

We are especially thankful for our M.O.M.s and T.E.A.M. members who are also nurses. Some of them were nurses before meningococcal disease touched their lives and now they use their story and their expertise to educate their patients and colleagues. Some are meningitis survivors who wanted to help others after enduring hundreds of surgeries or hours of dialysis themselves.

In honor of National Nurses Week, we reached out to these advocates and asked what inspired them to become nurses and what they love about their job. Here is what they said:

So this week, please thank the nurses in your life and help honor our nurse advocates by making sure you and your loved ones are up-to-date on vaccinations!

Give Kids A Shot!

5 May

Highlights from our annual gala to help #PreventMeningitis

On April 27, 2015 we gathered NMA families, supporters and immunization advocates in New York City for NMA’s seventh 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 with Alison Singer, Co-Founder and President of the Autism Science Foundation

MC for the night Dr. Paul Offit with Alison Singer, Co-Founder and President of the Autism Science Foundation

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: Carol Baker, MD

T.E.A.M. member Kyla Winters with Dr. Carol Baker and T.E.A.M. member Amy Aiken. Photo by R.Cole for Rob Rich/SocietyAllure.com © 2015

T.E.A.M. member Kyla Winters with Dr. Carol Baker and T.E.A.M. member Amy Aiken. (Photo by R.Cole for Rob Rich/SocietyAllure.com © 2015)

Dr. Baker has worked as an attending physician in infectious diseases for 40 years, describing this work on the frontlines as her “first love in medicine.” A role model for many in the field, she works tirelessly to educate parents as well as the medical and public health community about meningococcal disease diagnosis and prevention.

At the Gala she shared a little about why raising awareness is so important to her: “I began to hate meningococcal disease while holding my just deceased 14-year-old patient in my arms when I was an intern at Los Angeles County Hospital. This was a too long journey marked by many more losses, hope with the development of the first vaccine that not only was imperfect but also not used, and finally joy when I became a member of the national committee that recommended a new and much more effective vaccine 10 years ago. We all have more to do, however.”

T.E.A.M. Outstanding Service Award: Samantha Bennett

T.E.A.M. member Samantha Bennett with Shola and Deion Branch. The Deion Branch Foundation supports organizations committed to assisting those affected by meningitis, including NMA. Photo by R.Cole for Rob Rich/SocietyAllure.com © 2015

T.E.A.M. member Samantha Bennett with Shola and Deion Branch. The Deion Branch Foundation supports organizations committed to assisting those affected by meningitis, including NMA. (Photo by R.Cole for Rob Rich/SocietyAllure.com © 2015)

T.E.A.M. member Samantha Bennett survived meningitis when she was just nine months old and is now a talented professional artist. For more than five years, she has shared her story regularly with college students and local policymakers. Sam integrates her advocacy into everything she does, from presenting her paintings at local art studios to educating the public about meningococcal disease while participating in national reality television shows.

At the podium Sam congratulated all of NMA’s M.O.M.s and T.E.A.M. members for their bravery and dedication. She said that as a mom now, she “cannot fathom my children being as sick as I was.” Sam urges everyone to talk to a healthcare provider about meningococcal vaccination.

Nancy Ford Springer Inspiration Award: Kevin Carroll, MS, CP, FAAOP

Aoife Ciea, Mary Ciea and Kevin Carroll

Aoife Ciea, Mary Ciea and Kevin Carroll

Kevin Carroll is the VP of Prosthetics for Hanger Clinic and his commitment to improving prostheses has placed him at the forefront of numerous breakthroughs. He focuses on listening to each person’s thoughts and concerns and understanding their unique situations. Kevin’s work has helped some of our T.E.A.M. members and has also improved the lives of many other meningitis survivors (about 20% of whom live with long-term complications including amputations).

Kevin said that “it is a privilege to work with those who have survived meningococcal disease. Witnessing their strength and determination is an inspiration to me, and one of the most rewarding parts of my job,” and that his first-hand experience has made him an advocate for meningococcal prevention.

Champion of Progress Award: Gary Springer

Gary Springer with Gala Co-Chair and long-time NMA supporter Sara Herbert-Galloway. (Photo by R.Cole for Rob Rich/SocietyAllure.com © 2015)

Gary Springer with Gala Co-Chair and long-time NMA supporter Sara Herbert-Galloway. (Photo by R.Cole for Rob Rich/SocietyAllure.com © 2015)

This year we, and his son T.E.A.M. member Nick Springer, were honored give a special – and surprise – Champion of Progress Award to Gary Springer in recognition of his tireless dedication to making the gala a success each and every year and, more importantly, his commitment to realizing Nancy Ford Springer’s vision of a world where families don’t have to deal with this devastating disease.

NMA president Lynn Bozof with Darius De Haas who performed at the gala.  (Photo by R.Cole for Rob Rich/SocietyAllure.com © 2015)

NMA president Lynn Bozof with Darius De Haas who performed at the gala.
(Photo by R.Cole for Rob Rich/SocietyAllure.com © 2015)

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

If you were unable to attend the gala but would like to support NMA, click over to Charity Buzz to bid on items including lunch with The Americans star Richard Thomas, New York Yankees tickets or a behind the scenes tour of Good Morning America!

Surviving Meningitis, Part 2

29 Apr

“Most experts are well-informed about treating the acute illness, but once meningococcal patients leave the hospital they are beyond our view. We’re focused on their survival. That’s no small task against meningococcal disease, but we don’t necessarily recognize that they will be dealing with the impact of the illness for the rest of their lives.” —Dr. William Schaffner, Vanderbilt University*

Last week we wrote about the physical and emotional costs survivors of meningococcal disease face, but long–term complications of meningitis may also create practical and financial challenges. NMA T.E.A.M. member Carl Buher explained it best when he spoke at the Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practice’s (ACIP) February meeting:

“My name is Carl Buher. I survived serogroup B meningitis when I was 14.Carl Buher

I spent five months in the hospital, lost three of my fingers and both my legs below the knee. I had 11 surgeries, and it took me four years before I could walk again using prosthetics.

I still consider myself lucky. Eleven years later, I have a college degree, a great job and a beautiful wife. Most survivors I know feel the same way. We have pretty good attitudes and remain positive.

No matter how lucky we are, most of us will deal with the effects of this disease for the rest of our lives […]

When we get together, we talk about the challenges that we deal with that most people don’t even think about. Things like how to take a shower when you are traveling, or how hard it is to count to 10 on your fingers when you are missing a few.

For most of us, it will affect our finances for the rest of our lives. Our cost of living will always be higher since we may need additional support. There are the more obvious things such as we may need more time off of work to deal with medical complications or additional surgeries. Even those of us with great insurance plans pay an enormous amount in co-pays and out-of-pocket expenses. But there other things that no insurance will cover, such as the cost to renovate homes so we can navigate in our wheel chairs or retrofitting cars to fit our needs.

We’re all very different, but there’s one thing we universally agree on. We don’t want anyone to have to go through what we went through – and what we still deal with every day.

When you look at the cost of prevention, I hope you’ll calculate how high the cost of survival is as well.”

We hope public health officials will think about our stories and Carl’s words as they consider broader recommendations for who should #BVaccinated. In the meantime, all of our M.O.M.s and T.E.A.M. members urge you to talk to your healthcare provider about both the vaccine against serogroups A, C, W and Y and the serogroup B vaccine.


*At a January 2015 roundtable on meningococcal disease.

This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

Surviving Meningitis, Part 1

20 Apr

“When something horrible, like meningococcal disease, puts you in a hospital, in an intensive care unit for so long, you don’t come out the same.”

— Dr. Carol Baker,Texas Children’s Hospital*

Vaccines save lives. But did you know that they also protect against severe complications that can impact a person years after contracting a disease?

Up to 20 percent of meningococcal disease survivors live with long-term complications like hearing loss, amputations, brain damage or organ failure. Some of the challenges survivors face may be easily visible or evident to those around them, others are not. We asked a few of our T.E.A.M. members to share their experiences:

Amy AikenI still have a lot of challenges and complications. Prosthetics—the fitting—and my legs are so small and fragile, and skin grafted, that I constantly develop sores, wounds, blisters and infections, which can affect my walking, and sometimes it even sets me back into a wheelchair. We are also having complications with the kidney. It’s week by week. I have to get weekly blood work done. And I take about 30 pills a day. —Amy Aiken, survived four years ago at age 29

Mike LaForgia

I spent two months in the hospital. I needed to have amputations. […] It was a long recovery. After I came out of my coma, I couldn’t sleep. I had anxiety and fear and depression. I used to fall asleep and couldn’t sleep for more than 10 minutes before I would wake up violently just, you know, afraid I probably wasn’t going to wake up. –Mike LaForgia, survived 11 years ago at age 39

Kyla WintersI ended up becoming a quad amputee. I was on dialysis ten hours every day for a year. I went through rehab, and I had—I would say— maybe a dozen hand surgeries to try to lengthen my fingers. I was left with pretty much just fists, and I had to get my thumb separated and created to get opposition, because opposition is pretty much everything [in being able to use your hands]. –Kyla Winters, survived six years ago at age 37

Blake SchuchardtAfter my coma, it was another month before I was strong enough to leave the hospital and many months more before I could walk independently. My kidneys shut down, so I was on dialysis. It was only about a year before my kidney transplant, but I still take anti-rejection medications that need regular monitoring. Today I work as a dialysis nurse. —Blake Schuchardt, RN, survived 10 years ago at age 18

Casey MahlonWhen I left the hospital two weeks after waking up from a five-day coma, I couldn’t control my facial muscles. I got depression that went along with my inability to express emotion with my face. When I started college in the fall I realized I was having a problem with my memory and concentration. It took me a while to understand that it was a result of the disease and that I wasn’t just suddenly stupid and it took me a while to come to terms with the fact that this was a big deal. I still struggle with impressing on people the severity of the disease because they can’t see anything wrong with me. —Casey Mahlon, survived six years ago at age 17

Some of these advocates had not been vaccinated. Others had, but vaccines that were available at the time did not protect them against serogroup B meningococcal disease. Stay tuned next week when we’ll share a survivor’s perspective on why we need a routine recommendation for adolescents to #BVaccinated.


*At a January 2015 roundtable on meningococcal disease.

This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to

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