16 December 2016
In early December, CoMO Americas members came together for two days in Orlando, FL to share experiences, offer support and identify common goals and needs for the region in driving meningitis awareness. As an organization, we typically have one opportunity a year to come together in person – either as a global or regional group. The presence of nine Americas member organizations (16 people) and three individual advocates underscored the value of these meetings in energizing us all in our efforts. As the founder of the JAMIE Group, I have been a CoMO member for a long time and, as the mother of a meningitis survivor, I am continually inspired by our community. Meningitis does not discriminate, and it can kill in as little as 24 hours, or leave survivors with life-changing after effects, like my brave daughter, Jamie. As I reflect on our full two days together, there are three key insights that I want to share:
1. We learn from each other
With 57 members across 29 countries, CoMO is diverse and wide-reaching. In the Americas, we have 21 members from 5 countries, and our conference was designed to promote sharing and learning amongst our members. Courtney Martin of the Ryan Martin Foundation shared a case study on fundraising, a critical topic for all those in the non-profit arena and vital to the work of CoMO and our members. Her talk inspired a rich and varied discussion across attendees, with members sharing learnings and tips to help advance the efforts of our peers.
Greg Williams, who lost his 19 year old son to meningitis and partners with me on advocacy work in Texas, joined me in sharing our experience in advocating for state mandates. The power of our stories and the importance of seeing and hearing the real impact of meningitis cannot be understated. Together, our members brainstormed a number of priorities and potential resources to advance all of our efforts.
2. We support each other
Our experience with meningitis connects in real and sometimes painful ways. Our welcome reception on Friday evening was an opportunity to re-connect, to hear how each of us is doing in our journey after meningitis touched our lives and to offer comfort, ideas and support.
We also were fortunate to have Sally Morsbach of Mourn to Light facilitate a session on bereavement and after effects, recognizing that we all have been touched by grief in some way. Many of us are motivated by this grief to raise awareness of meningitis so that others hopefully do not have the same experience. Knowledge is power and community is comfort.
3. Together, our work can have an even greater impact
CoMO is a great connector, and it is powerful to be part of a larger, global effort to prevent meningitis because we can and we should. As a team, we talked about World Meningitis Day as a platform to educate and engage others in our cause. In fact, CoMO established World Meningitis Day in 2009 – after a suggestion from Bob and Dee Dee Werner of the Becky Werner Foundation, a member organization – to help bring visibility to meningitis around the world. April 24 is a dedicated day for each of us as individual members and as a global organization to band together in the fight against meningitis. We talked about our key priorities and programs we could implement to help bring more awareness to the disease.
We also were joined by two outside speakers – Sheri Steinig of Generations United and Dr. Laura York of Pfizer – who helped bring new ideas, relevant programs and the latest in ongoing meningitis research to our discussion. Generations United is leading a program, Bandage of Honor, that highlights the importance of vaccination across the ages. The impact of meningitis in infants, adolescents and adults was evident just in the experience of our attendees, and we learned of a number of strategies and tools to help our efforts in underscoring the importance of immunization across ages to prevent meningitis. And, Dr. York shared an incredibly informative presentation about the various causes of meningitis, the shifts in epidemiology that further underscore broad vaccination and highlights of vaccine research that may lead to new tools for physicians and parents in the future.
I am so grateful to our attendees for sharing their time, their stories and their learnings. As a region, we have identified key priorities to drive our efforts in 2017 and, I believe, we are more inspired than ever in our quest to educate about meningitis. If you lead an organization in the Americas that is focused on meningitis and would like to join us in our efforts, please don’t hesitate to reach out to me or our regional coordinator, Tegwyn Collins.
Written by
Patsy Schanbaum
Americas Leader
Patsy’s daughter Jamie lost both her legs below the knee after contracting meningitis and septicaemia in 2008 at 20 years of age. Patsy, Jamie and their family joined the fight against meningitis and created the Joint Advocacy for Meningococcal Information and Education (J.A.M.I.E.) Group.