World Meningitis Day started when a group of people who had been affected by it decided that there should be a day dedicated to raising awareness about this life changing infection.
“In January 2009, CoMO met in London and set themselves a task: to coordinate the first World Meningitis Day. The aim was to bring together a global community of people affected by meningitis; to reach people with no knowledge of it; and to ensure no one learns about it for the first time when they are seriously ill with meningitis in hospital.”
Taken from the blog post, Introducing World Meningitis Day: What it is, why it matters and how to play your part.
Since then, individuals and organisations around the world have come together once a year (on top of their regular activities) to mobilise their communities and hold some incredible activities to raise awareness about meningitis. In the past, this has included radio interviews, television broadcasts, zumbathons, children’s book releases, reaching out to local policy makers and much more.
Let’s take a look at some of the innovative ways that CoMO’s incredible members are raising awareness about meningitis in commemoration of this year’s campaign:
Ambiguously Blind podcast in the U.S.A: World Meningitis Day edition
A member in Texas, John Grimes, is a meningitis survivor who experienced partial vision loss as well as other neurological impairments as a result of his experience. He now runs a podcast called Ambiguously Blind, where he talks to people who have been affected by meningitis or affected by partial or total vision loss.
For World Meningitis Day, John talks to Andy Marso, a fellow meningitis survivor. Andy, like John, lives with the permanent after effects of his battle with meningitis. He survived somewhat miraculously thanks to the fast action of a friend and local doctors which he discusses in his book, Worth the Pain: How Meningitis Nearly Killed Me, Then Changed My Life for the Better.
This Ambiguously Blind episode hears Andy and John talk about their experiences of meningitis alongside their experiences of life after meningitis, centering deeply on the overarching understanding that Andy outlines: “we are entitled to nothing but can accomplish anything.”
John explained that his podcast offers a “tremendous opportunity to connect with and be inspired by the extraordinary stories of seemingly normal people.” As he continues to navigate this journey, he hopes to “spread awareness about meningitis and give people the forum to express themselves, grow and work through the challenges they may be facing.”
His motto encompasses the idea that the world isn’t going to wait for him: “I will succeed when my desire exceeds the limits of my disabilities.”
An Informative Lecture in Japan
Japan Child Meningitis Organisation (JaCMO) has opted to host an in-person event this year, which is something they’ve missed greatly due to Covid-19 restrictions, so we’re very excited for them. Their event will be an open lecture held in Chiba city, Tokyo. It’ll be free to attend and held on October 9th with lecturer, Reiko Junma (Professor, Comprehensive Safety and Health Management Organisation, Chiba University) exploring the topic, "Did you know? Knowledge of infection control when travelling abroad or carrying out overseas assignments."
Translation: in the lecture, she will talk about the basics of infection control, including vaccination, so that you do not panic when studying abroad or on overseas assignments.
Holding public lectures that cover infection control in practical settings is a great way to spread the word about infectious diseases like meningitis and vaccines I.e. the most powerful measure available to prevent meningitis. . This is especially significant in countries like Japan, as Hajime from JaCMO notes, “this lecture is very important for sharing information about meningococcal diseases with audiences because most Japanese people do not know about the infection well.”
Raising awareness via sports in New Zealand
Next, let’s have a look at the unique idea that our member, Meningitis Foundation Aotearoa New Zealand have got ready for the Mid Canterbury Rugby Union (MCRU), who will be showing their support by wearing socks with the Foundation’s logo in commemoration of World Meningitis Day.
The chairperson of the Meningitis Foundation Aotearoa New Zealand, Gerard Rushton, lost his only daughter Courtenay to meningococcal meningitis in 2014, when she was only 16 years old. Gerard and his wife, Claire, have since campaigned to raise awareness about the devastating impacts that meningitis can have.
“It would be too easy to retreat into seclusion after losing a child but doing life till you find life again” is important to Gerard. This motive led him to take up the position of MCRU’s board person in 2015, not just because of his commitment to, and passion for, rugby, but also as a way of rediscovering purpose in life.
The Meningitis Foundation Aotearoa New Zealand will be presenting to the New Zealand government’s Health Select Committee on October 26th to argue that teenagers should receive free meningococcal vaccines before they leave school at 16. Putting a price tag on vaccines will inevitably mean that those who can’t afford it are less likely to be protected against meningitis but it also sends the message that meningitis prevention isn’t important. In reality, there are many families out there like the Rushtons, who have experienced an indescribable loss and know that prevention is key.
The Mid Canterbury Heartland representative team will be wearing purple socks for the game on October 1st (4 days prior to World Meningitis Day) and all proceeds from the gate takings are being donated to the Meningitis Foundation Aotearoa New Zealand. This will not only help support the important work that the foundation carries out but it also acknowledges the work they’re doing to raise awareness about meningitis, save lives and address inequalities in vaccine access.
The game is being televised by Sky Sport who are also interviewing Gerard and this reach will cover all of New Zealand – what an amazing idea.
Discounted meningitis vaccines in Peru
Screenshot taken from Una Vida Por Dakota’s campaign (‘La Meningitis Sí Avisa’) video.
Apart from launching their huge campaign, ‘La Meningitis Sí Avisa’ (‘Meningitis: it does warn’), Una Vida Por Dakota have been working with private hospitals to offer discounted meningitis vaccines for World Meningitis Day.
Their campaign, La Meningitis Sí Avisa, focuses specifically on meningococcal meningitis and members of the public can even access the campaign’s website to view the private medical centre closest to them. Peru is the third largest country in South America and is divided into 24 regions, so this is an incredible way to make it easier for people to make a plan to get vaccinated and defeat meningitis. From New Zealand to Peru, our members are working hard to address issues of vaccine access – meningitis can strike anyone at any time but it hits the poorest in our communities the hardest and no one should get left behind.
Amazing... but that’s not all.
Those are some fantastic activities and the organisations and individuals behind them are no less fantastic. There’s a lot of work that goes on behind the scenes for the day but our members continue throughout the year with activities dedicated to defeating meningitis in their communities and countries.
World Meningitis Day might be a day dedicated to meningitis, but the reality is that meningitis exists all year round. It continues to devastate communities, families and individuals all over the world, and our members know this all too well. That’s why their activity doesn’t stop with World Meningitis Day.
That’s why in Canada, for example, Meningitis Foundation Canada (MFC) have spent a lot of time and effort revamping their website.
“Redesigning our website has taken a lot of work this past year but it's essential work. The redesign aims to re-engage our core supporters, spotlight our In Memoriam & Survivor stories and videos, reinforce our social media feeds/posts, attract new supporters/followers and promote our meningitis prevention awareness campaigns and fundraising events. The website is the hub of all our activity, so you can see it's an asset worth looking after.”
Michael Redfearn from MFC perfectly highlights the importance of the necessary behind-the-scenes work of organisations committed to sharing accurate and accessible information on meningitis. Their website acts as a hub to which their audiences can return to for answers to their questions, to receive support, to learn more and, ultimately, to protect families and defeat meningitis in Canada.
Join the race to defeat meningitis
Why are we calling on people to join the race to defeat meningitis this World Meningitis Day? In September 2021, the World Health Organisation (WHO) and partners launched the Global Road Map to Defeat Meningitis by 2030. This strategy is the first of its kind and once realised there could be 200,000 fewer people dying every year.
This is only possible if we see improvements in the five key pillars identified by experts worldwide: prevention and epidemic control; diagnosis and treatment; surveillance; support and aftercare; and advocacy and engagement. Only action will get us there.
The work of CoMO members naturally aligns with the pillars identified by WHO and so they are working to get us closer to that 2030 vision every day. Other members, like Care and Development Centre (CADEC) in Nigeria, have been closely involved in the process. The Founder, Omorodion Rhoda, was recently invited to present during the WHO AFRO regional framework launch, a historic moment showing that Africa is leading the world in its commitment to defeating meningitis.
Rhoda has met many people affected by meningitis in Nigeria through her work. She got “[her] foot in the door of the WHO” by being a dedicated and persistent advocate who aims to amplify the support needs of people affected. Rhoda can provide the perspective of an advocate during high-level WHO meetings because of the community engagement she does, including appearances on radio talk shows and video interviews so that more and more people know when it’s urgent to seek medical attention.
“We have equally had engagement with the state to promote meningitis awareness. The State Ministry of Health is seriously interested in marking this year’s World Meningitis Day with us. If this is achieved, it would be a big milestone for us at CADEC.”