Who we are

Meningitis Research Foundation is founded, bringing together people and scientific evidence to achieve our vision of a world free from meningitis.

Cases of meningitis in the UK remain high. We keep meningitis at the forefront of the public health agenda by collaborating with survivors to highlight cases in the media, with health professionals to ensure people have the information they need during outbreaks, and with the UK government to develop public health guidelines.

We raise awareness of the UK’s introduction of a vaccine to prevent Haemophilus influenzae type b (Hib) infection, reducing cases of meningitis in babies and children. We continue to highlight other types of non-vaccine preventable bacterial meningitis, raising public health understanding and knowledge.

Our helpline, offering one-to-one advice to anyone on meningitis signs, symptoms and treatment, as well as expert support for those affected by meningitis, is established. Today our helpline has supported thousands of people and is at the very heart of what we do.

Made up of international scientists who volunteer their time and expertise, our Scientific Advisory Panel is established. It ensures we fund scientifically robust research, in line with our research strategy.

We begin funding research into how people’s genes influence their risk of meningitis, informing patient care and laying the groundwork for novel approaches to diagnostics.

The MenC vaccine is introduced in the UK to the student-aged population. This life-saving health improvement is the result of campaigning led by us, working with other organisations and the public. We switch to supporting the uptake, reassuring people about vaccine safety and publicising the importance of getting vaccinated.

Our campaigning continues as the UK government responds to our calls, working with other charities, for the rapid roll-out of MenC vaccine to all babies, children, and young people. As a result, rates of Meningitis C rapidly drop from 1,300 cases a year in the UK.

We focus on raising awareness of the high burden of pneumococcal meningitis in the UK and globally, joining initiatives calling for low-income countries to have access to the pneumococcal vaccine (PCV). By 2006, the pneumococcal vaccine (PCV) is being introduced into the UK’s routine vaccination schedule; we write to the Irish Taoiseach, Bertie Ahern, urging Ireland to follow the UK in its adoption.

Three families from France, Brazil and the UK connect at an event. All are parents of children affected by meningitis, founders of meningitis organisations and passionate about making a difference.  Together they will become the founding members of the CoMO.

The three families come together in the UK, inviting organisations and individual advocates from around the world. This leads to twenty representatives from eleven countries signing a joint declaration, pledging to increase awareness of meningitis, support people affected, promote vaccines and research and share experience with other member organisations. CoMO is born.

CoMO grows to over 40 members, working together to shape the network’s initiatives.  Successful member conferences are held in Warsaw, New York, Washington and Florida. In Florida, the first governing council is elected.

CoMO’s Council establishes its constitution; CoMO applies for and is officially registered as an organisation in Western Australia, with its base at the Meningitis Centre Australia. The Becky Werner Meningitis Foundation, USA suggests an international day of coordinated meningitis awareness-raising, which CoMO members from around the world support. World Meningitis Day launches with the experience of those affected by meningitis at its heart.

Our ‘Counting the Cost’ campaign calls for the widest and earliest implementation of vaccines against meningitis in the UK. Meningitis survivor, Robbie Jones, delivers a petition to Downing Street; a ‘Meningitis Matters’ day sees people affected by meningitis at the House of Common; MPs sign the ‘Counting the Cost’ petition; and letters are published in the media calling for extended vaccination. Findings from our ‘Counting the Cost’ research are submitted to the Joint Committee on Vaccination and Immunisation (JCVI), as evidence on the MenB vaccination.

We commission the world’s first Meningococcal Genome Library, helping scientists develop and test vaccines for meningococcal infections. This is a ground-breaking resource, holding the complete genetic blueprint of bacteria isolated as a cause of meningococcal disease in the UK.

Our very first challenge trip to Kilimanjaro launches, now one of many challenge events that help to fund our research, campaigns, advocacy and support activities.

Our Medical Advisory Group is formally established, to ensure clinical best practice in the support we provide. Today, they continue to be vital in supporting our development of clinically robust information for the public on meningitis.

Building on our work on cost-effectiveness, the UK government and pharmaceutical companies agree on a price that leads to the introduction of the MenB vaccine for infants. The UK is one of the first countries in the world to introduce MenB into its routine vaccination schedule, paving the way for other countries.

The Meningococcal Genome Library highlights the sudden increase of meningitis W in the UK, due to a particularly virulent strain of the disease, providing vital analysis to support the routine introduction of MenACWY vaccination in the UK.

Our Support Services expand with Pushing the Boundaries, bringing together families who have a child with limb loss due to meningitis or septicaemia. A whole family event, children and their siblings enjoy activities, while parents and carers share experiences and get support from our specialist team.

At CoMO, after serving as president for more than five years and helping to grow the network to over 50 members, Bruce Langoulant steps down as CoMO’s president. Chris Head, CEO of Meningitis Research Foundation steps into the role.

Despite global efforts to tackle meningitis, progress is still behind other infectious diseases. We join the World Health Organisation (WHO) and other organisations to discuss developing a global plan to defeat meningitis.

As we see continued cases and deaths among those who had missed out on the MenB vaccine as infants in the UK, there are public calls for catch-up vaccinations. We advocate for this for all under-fives.

In collaboration with the WHO, we organise a meeting bringing together more than 50 stakeholders to discuss the need for a global plan to tackle meningitis. This results in a broad consensus and WHO commitment to take this forward.

We work with Meningitis Now to call for improved diagnosis and treatment in the UK, including supporting families affected by meningitis to meet the Secretary of State for Health. This results in the UK government agreeing to establish a working group to investigate the issue.

We participate in the UK’s improving diagnosis and treatment working group, resulting in the recommendation for routine provision of ‘safety-netting’ information for those sent home by their hospital or GP without a diagnosis.

We win the Third Sector’s ‘Communication Campaign of the Year’ for One Life, One Shot, raising awareness and increasing uptake of MenACWY vaccine among teenagers, particularly those starting university.

We support a major civil society consultation, asking people affected by meningitis what they want to see in the WHO’s global strategy to defeat meningitis. The consultation receives over 3,000 responses, including from members of CoMO.

We launch the Meningitis Progress Tracker, enabling advocates to access global data about meningitis in one tool.

We introduce live chat to our helpline services, enabling people affected by hearing loss, and those not ready to speak over the phone, to access our support for the first time.

WHO member states approve the Global Road Map to Defeat Meningitis by 2030, with a clear plan in place on prevention and epidemic control, diagnosis and treatment, disease surveillance, support and care for people affected by meningitis, and advocacy and engagement.

We begin collaborating with international experts to establish a Global Meningitis Genome Partnership, linking resources for the four leading causes of bacterial meningitis to help identify and monitor strains, control epidemics and support vaccine evaluation and development.

Meningitis and Me launches, our National Lottery funded video series of peer-to-peer support, sharing experiences, tips and advice by and for those affected by meningitis.

We strengthen our long-standing collaboration with CoMO and its members, becoming one organisation so we can work even more closely together to defeat meningitis.

The WHO’s Global Road Map to Defeat Meningitis By 2030 is launched in Geneva by Dr Tedros Adhanom Ghebreyesus, WHO Director General. We are invited to join the WHO Technical Task Force for the next phase, collaborating with many partners on its implementation.

With CoMO and Meningitis Research Foundation now one organisation, our team takes on coordination of World Meningitis Day: a global movement is born, with the number of countries supporting the day rising from 48 to 106 in just one year.

In memory of Jessica Bethell, we work with the Bethell family to launch our MenB research grant call.

We secure initial funding from the National Lottery Community Fund to develop our Ambassador programme, so people with experience of meningitis can volunteer with us to raise awareness and understanding in communities across the UK and Ireland.

Our research conference returns. The only global research conference dedicated to meningitis, in its 14^th year it brings together more than 200 delegates and 46 speakers from seventeen countries.

Working with leading para-athletes, CoMO members, pharmaceutical company Sanofi and designer Laura Spring, we co-develop and launch the Meningitis Flag.

Meningitis has its first ever WHO-led high level meeting in Paris. At the meeting, we speak about the importance of civil society support and engagement to defeat meningitis. Mike Davies, our Ambassador, and three CoMO members share their personal experience of meningitis.

The WHO publishes its investment case for the Global Road Map to Defeat Meningitis by 2030, highlighting the need for $37.5 million for advocacy and engagement. Our Ambassadors and CoMO members provide all the personal testimony for this critical document.

World Meningitis Day continues to go from strength to strength, reaching 1.7 billion people with life-saving information on meningitis.

We continue to invest in ensuring advocates can access global data on meningitis in one tool, with the launch of a revamped Meningitis Progress Tracker.

We work with the friends and family of Eddie Rosen (son of children’s author and poet, Michael Rosen) to launch Big Eddie’s Joke Book, turning laughter into life-saving awareness.

As the Global Road Map to Defeat Meningitis by 2030 reaches its halfway point, we launch our campaign for Ministries of Health across the world to support and develop national plans on meningitis (one of the key milestones in the WHO’s Road Map).