In 2024, the Confederation of Meningitis Organisations (CoMO) turned twenty. To celebrate this milestone, we're looking back over the history of the network and telling the story of how CoMO became a truly international movement.
In 2003, three families from France, Brazil and the UK were invited to a pharmaceutical company event in Italy about a new meningitis vaccine. They quickly connected, as parents of children affected by meningitis and founders of meningitis organisations. All three were passionate about making a difference on a large scale, and so they began to consider international collaboration. What might they achieve if there were a global community of meningitis organisations?
They quickly organised a meeting in Runnymede, UK, in 2004, inviting additional organisations and individual advocates from around the world. They presented their concept and a set of draft principles. Everyone agreed the idea of an international network was very promising. After much discussion, twenty representatives from eleven countries signed a joint declaration. They pledged to increase awareness, support people affected by the disease, promote vaccines and research, and share experience with other member organisations around the world. CoMO was born.
“It was exciting coming together to discuss our foundations and how it would be to join forces”, says founding member Kathryn Blain (Meningitis Foundation Canada). “The value for me was to share best practice and encourage others in our challenges within our own countries: raising awareness, advocating for vaccines and improving public policy.”
“Before that meeting in Great Britain, we had nothing”, says fellow founding member Alejandro Velasco (Fundación Illyria Velasco Carranza, Mexico). “Afterwards, we came out strengthened."
“The spirit of CoMO is bedded in the sharing of experiences of meningitis by those directly impacted”, says Bruce Langoulant, founding member and CoMO President from 2009 to 2015. “Their courage to tell their personal stories of how meningitis impacted their lives is what resulted in the creation of CoMO.”
The early growth of the network
The common bond between these founders gave the fledgling group its fuel to expand and attract new members. These included individual meningitis advocates, such as survivors and healthcare professionals. With the catchphrase “Globally united, regionally enabled”, CoMO also attracted the interest of professional organisations, governments and the public in many parts of the world as members extended their local advocacy activities.
“Growing the CoMO family as quickly as possible was a deliberate strategy across 2005-2008 to capture the momentum from the UK meeting”, says Bruce Langoulant. Successful conferences were held in Warsaw, New York, Washington and Orlando in consecutive years. The effort was significant and determined, resulting in the Orlando conference electing the initial governing council. Over 40 representatives from across the globe participated on a voluntary basis to shape CoMO’s plans and initiatives.
The Council was tasked with establishing the constitution, and subsequently, officially registering CoMO. This was achieved in 2009: the CoMO network was registered in Western Australia and based at the Meningitis Centre in Perth, Bruce Langoulant’s organisation.
The creation of World Meningitis Day
With its roots established, members began to discuss how to create wider-reaching campaigns. They came together around the idea of an international day of coordinated meningitis events and awareness-raising, after the idea was suggested by Bob Werner (Becky Werner Meningitis Foundation, USA).
“As soon as I brought it up at a meeting with other CoMO members, everybody jumped on board and the buzz started”, says Bob.
In 2009, World Meningitis Day was launched. The experience of those affected by meningitis was central to the campaign, and their stories began to reach new audiences around the world.
“The growing recognition of the power of the survivor – of family voices and their stories – has added weight to the key role of advocacy”, says Bruce Langoulant. “This has enabled campaigns for better vaccine access and much improved awareness of the early signs and symptoms of meningitis globally.”
Crowning this period of growth was the 2011 conference in Paris and the introduction of regional conferences. These added a local focus and attracted potential new members to meet CoMO close to home. They also allowed members to gain a deeper understanding of each other's work.
CoMO added its first regional coordinator to the team in 2012 and have kept this model in place ever since, to ensure our global messages are viewed through an appropriate regional lens. Today, CoMO has a coordinator for each of its four regions: Asia Pacific, Europe, Africa and the Americas. They are dedicated to supporting members in their regions.
CoMO registers in the UK
After serving as President of CoMO for more than five years, and helping to grow the network to over 50 members, Bruce handed over the reins to Chris Head in 2015. Chris was CEO of the Meningitis Research Foundation (MRF) at the time, and had already been heavily involved in the work of CoMO for several years. Chris was based in the UK, and with CoMO predominantly run by volunteers, it was decided to set up a new registration as a UK charity. CoMO gained this status in 2016 and operated out of the MRF offices.
While CoMO was moving to the other side of the globe, discussions began between MRF and the World Health Organization about the concept of a Global Road Map to Defeat Meningitis. This would be a high-level strategy for significantly reducing the burden and impact of meningitis around the world, backed by international health bodies and governments. CoMO had a seat at the table at the first wider meeting of stakeholders, held in 2019.
Sam Nye, Joint Head of CoMO, states, “It was such a striking moment, sitting round a table with experts in meningitis, global health and advocacy. And it was an honour to represent so many inspiring meningitis advocates. The voices of people with direct experience of meningitis were included in plans from the very start, a crucial and very notable step.”
From then on, CoMO was represented in the work of the Road Map, alongside MRF. However, it quickly became apparent that with the work of both charities being ever more aligned, they would be far more efficient as one entity. After much consultation, members endorsed a proposition of a merger through a vote. The two charities merged in 2021, with the CoMO network becoming a part of MRF. That same year, the Road Map was officially launched, setting ambitious goals for 2030.
Where CoMO is today
Twenty years on from its creation, CoMO now has over 150 members in more than 55 countries. Its growth has been especially rapid in recent years, nearly doubling from its 81 members in 2022, and we have plans to grow even further in future.
Since the launch of the WHO Road Map and the merger with MRF, our members have gained stronger connections with international health bodies. And they play a more critical role than ever in driving efforts to defeat meningitis around the world. Learning from each other, they continually find new ways to get life-saving messages about meningitis prevention and care to members of the public. They work with governments, while reminding them of their commitments to work towards the objectives of the Road Map. And they keep the voices of people directly affected by meningitis at the centre of national and international conversations.
“We have stayed the course from our beginnings to the thriving international advocacy organisation that CoMO is today”, says Bruce Langoulant. “That is testament to both the founding members and to our global spirit.”
As we keep looking to the future and to our shared goal of seeing meningitis defeated by 2030, we will continue to be driven by the same fundamental motivation. We are dedicated to preventing the many personal tragedies that our members have witnessed, or experienced directly, from recurring.
Founding member Lulu Bravo (Philippine Foundation for Vaccination) concludes: “I have always believed that joining CoMO opened up a whole new perspective for me on the human face of meningitis. As scientists and doctors, we know the numbers of meningitis cases, but that cannot compare with the face-to-face reality of the suffering of families and victims of meningitis. We need to keep raising awareness of such tragedies to continue doing something good for others.”
Today, our members carry out a wide range of innovative activities to raise awareness of meningitis. They also campaign for better prevention, diagnosis, treatment and aftercare. Here is just a small selection of photos of their work (click on the arrow to see the next image).
Want to be part of our global meningitis movement? We welcome new members who share our mission to defeat meningitis.
We would like to extend heartfelt thanks to all of the CoMO members who provided quotations and insights for this blog, especially Bruce Langoulant for his substantial input. Thanks also to longstanding members Jimmy Voisine, Elena Moya and Linda Gibbs for providing photographs and additional insights.
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