Alicia Stillman is a passionate CoMO member who shared her personal experience of meningitis at the first World Health Organization (WHO) high-level meeting to defeat meningitis in April 2024. She spoke to us about her impressions of this landmark event.
Tell us about your organisation and what you are doing this year.
I am the Executive Director of the Emily Stillman Foundation and the Co-Executive Director of the American Society for Meningitis Prevention (ASMP), both of which are non-profit organizations that work to educate the public about meningococcal meningitis and the vaccines available to help prevent it.
In 2014, I founded the Emily Stillman Foundation in honour and memory of my daughter, Emily, who at the age of 19, lost her life to Meningitis B before the MenB vaccine was available to help protect her. In 2017, I partnered with Patti Wukovits, the Executive Director of the Kimberly Coffey Foundation, to form the Meningitis B Action Project, which just recently rebranded to ASMP to help ensure there was a national organization in the United States focused on ensuring that no other life is unnecessarily lost to this devastating disease.
In the United States, the meningococcal prevention landscape is rapidly changing with the recent advent of a meningococcal pentavalent vaccine and meningococcal vaccine recommendations set to be revisited in the near future by the Centers for Disease Control and Prevention (CDC).
For the remainder of the year, we are working on a large national campaign with fellow CoMO members in support of World Meningitis Day on October 5 and building up our network of advocates at ASMP to help share the importance of personal stories in the fight against meningitis.
What were your impressions of speaking on the day as a parent in front of such an influential audience?
After leaving the first high-level meeting to defeat meningitis, I can tell you that as a public health professional, I left inspired and energized to contribute to the investment case. It was an absolute privilege to be able to share the work of ASMP and the Emily Stillman Foundation with such an esteemed group of professionals. As a parent, I felt unbelievably proud to share Emily's story with so many influential people working toward this shared goal. I cannot thank the WHO and the French government enough for providing this forum for us to come together to strategize a path forward to defeat meningitis.
Why was the WHO high-level meeting an important milestone in defeating meningitis?
The WHO high-level meeting brought together global leaders, public health professionals, and advocates to strategize a unified path forward in combating this devastating disease. This meeting provided a critical platform for aligning international efforts, sharing best practices, and driving investment toward meningitis prevention and treatment.
How did the voices of CoMO members influence the day?
The voices of CoMO members were pivotal during the meeting, bringing a deeply personal and powerful perspective to the conversation. As a parent and advocate, sharing my daughter Emily's story underscored the real-life impact of meningitis and the importance of prevention. The collective testimonies of CoMO members served to reinforce the importance of global collaboration in the fight against meningitis.
If you'd like to learn more about the WHO roadmap to defeat meningitis by 2030, please click here.
Find out more about our CoMO members: Emily Stillman Foundation, Kimberly Coffey Foundation and American Society for Meningitis Prevention.
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