13 October 2015
This year’s global conference was the 6th of its kind, held in the beautiful city of Seattle, USA, from September 19th – 21st. Delegates from all over the world came together to hear about the latest developments within CoMO and to learn new strategies to further the work of their organisations.
Members of staff and the governing council began the conference with a visit to the Bill and Melinda Gates Foundation (BMGF). We received a warm welcome from BMGF representatives and were introduced to Lauren Newhouse, communications officer at PATH. Lauren began the meeting with a presentation on PATH’s involvement in the enormously successful Meningitis Vaccine Project (MVP), with the introduction of MenAfriVac and subsequent near eradication of Meningitis A outbreaks in Africa. She also discussed the gaps remaining and areas where further work is needed to combat meningitis in future.
CoMO governing council and staff members with Angela Hwang (BMGF) inside the BMGF
Next, we heard from Angela Hwang, Senior Program Officer at BMGF. Angela began her presentation with a reminder of one of the core beliefs of BMGF, that ‘All lives have equal value’, one of the reasons that vaccines are at the core of what they do. We were given a fascinating insight into the background of the BMGF and their integral role in the MVP. The meeting was concluded with a tour of their beautiful Washington offices. A quote on the wall of the canteen was particularly fitting for the occasion - ‘There is one lesson I’ve learned over the years which stands above all others. It is simply this: We are all in this life together and we need each other – Bill Gates, Sr.’ – We couldn’t agree more.
The first day was concluded with a lively welcome drinks reception at the top of the Washington Athletic Club, where new members were welcomed into the CoMO family and were given the opportunity to exchange stories and get to know one another ahead of the busy weekend.
Bruce Langoulant, President of CoMO and himself the parent of a meningitis survivor, got the first session off to a flying start with an inspiring introduction, reminding us of where CoMO came from and where we’re heading.
Emotional stories from CoMO members
He then handed over to our members, many of whom have lost children and friends, or now live with the after effects of the disease, who gave emotional accounts of their own encounters with meningitis. These stories served as powerful reminders of why what we do is so vital, protecting others from the suffering this disease can cause. They also draw us together – they tell us we’re not in it alone.
Following the introductions, there were presentations given by members of the CoMO governing council. Attendees learnt about two projects now underway at CoMO, the first of which being the Cost of Meningitis Research Project currently taking place in Australia, run by a leading authority on meningitis and member of the CoMO Scientific Advisory Group, Professor Robert Booy. The project looks at not only the financial impact of the disease but also the emotional cost on the individuals affected and of course their families, updates on this are soon to be added to our website. The other project discussed was the European Life Course Immunisation Initiative. This project is being undertaken in partnership with the International Federation of Ageing (IFA) and looks at ensuring individuals have access to vaccination regardless of age and geographical location. More information on this project can be found here.
Chris Head, CEO of the Meningitis Research Foundation (MRF) and CoMO Vice President, talked about the successful campaign in the UK for Meningococcal B vaccines for babies. Delegates learnt about some of the advocacy tactics used, in particular the hugely successful #Where’sOurVaccine social media campaign and the influential cost effectiveness study, which led to the introduction of the Bexsero vaccine as of September 1st this year. He expressed hope that this will inspire other countries to do the same in the not too distant future.
Tegwyn Collins giving a presentation to members
Tegwyn Collins, Friend of CoMO and Americas Regional Coordinator, reported on World Meningitis Day 2015, highlighting the importance of this tool for global awareness and paving the way for further discussions the following day on plans to boost momentum in future. Bruce Langoulant gave an update on our global profile and the continued importance of the CoMO Change Equation, which states that in order for change to happen there must be cohesion between parent/patient advocates, health experts and key opinion leaders. The session was concluded with regional updates from each of the regional leads, highlighting local successes, awareness campaigns and plans for the future.
The afternoon session was a time for members to develop their knowledge of advocacy and fundraising tactics. Simon Godfrey, head of advocacy at GSK, gave an extremely valuable insight into best fundraising practice and the position of GSK within the advocacy landscape. He answered questions on local, regional and global funding and gave tips on how to achieve success in funding applications for our members. The final speakers for the day were Debora Sandiford and Margaret Miller from the policy, advocacy and communications team at IVAC, and Kyra Rosow, International Therapeutic Area Lead at Pfizer.
Kyra explained Pfizer’s involvement in vaccines and where meningitis fits in for them. She provided valuable insights from their global strategic approach to rare diseases to help members develop their own ideas for strategic planning and discussed how to overcome common barriers to vaccine uptake. Kyra’s parting remark resonated true for the room- unified patient engagement is vital to success. Debora and Margaret built on Kyra’s presentation with an interactive discussion on making meningitis relevant to members’ countries. They covered effective strategies and tactics and used case studies to demonstrate the basic concepts of advocacy that are crucial to successful campaigns.
Asia Pacific Regional Planning Session
The final day of the conference drew together the concepts discussed the previous day and consisted of a number of workshops for our members to develop regional plans. When our members come together with their hugely varied skills and expertise their drive and determination is truly inspiring, this was clearly evident during these sessions. Tegwyn Collins gave members a structure to follow and then the ideas started flowing! Each region produced plans for future conferences, World Meningitis Day 2016 and a whole host of other ideas to move CoMO forward.
After the plans had been made it was sadly time for everyone to say goodbye. For many it was the first time they had met other members, for others it was a time to reignite the enthusiasm from past meetings. No matter which, everyone left having been reminded why what we do is so essential and that we are not alone in the fight against this terrible disease, we will continue to work towards preventing meningitis worldwide, because we can and we should, and we’re getting that much closer!
CoMO members group photo
Sam is admin and marketing officer at CoMO. She has a background in scientific communications and marketing and working with volunteers in the charity sector.