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A survivor, a mother and a passionate advocate – the newest members of our Advisory Council

In 2023, we were delighted to welcome two new CoMO members onto our Advisory Council as representatives of the Americas: John B. Grimes, a meningitis survivor, podcaster, writer and Friend of CoMO from Texas, USA; and the Brazilian Association to Combat Meningitis (ABCM), represented by their president Suelen Caroline Santiago Magalhães Rosalino and director of organisational relationships and projects Antonio Carlos Ramos e Silva.

 

John is the first meningitis survivor, and ABCM the first member from South America, to be part of our Advisory Council – just two of the many reasons we were especially excited to welcome them on board.

 

The CoMO Advisory Council provide our staff team with essential advice and regional perspectives on a variety of matters including new member applications, our annual conference, and other decisions that will affect our membership.

 

Read on to learn about John, Suelen and Antonio’s backgrounds, their motivations and their hopes for the future.

 

 

 

Suelen and Antonio – the Brazilian Association to Combat Meningitis (ABCM)

This interview has been translated from Portuguese.



 














What led you to get involved in meningitis advocacy?

 

Suelen: In 2017, my son João Marcos was diagnosed with meningococcal meningitis B.

My family and I didn't know the reality of the disease and what it could cause.

After spending more than 100 days in the ICU, fighting for João's life, and eventually returning home with our son having several sequelae left by meningitis, we planned to find ways to provide information about the disease and help survivors in some way. We soon discovered that there was no organization with this philosophy in our country.

 

Together, with a shared vision and purpose, in 2021, we legally founded ABCM, with the aim of raising awareness about meningitis and its prevention; empowering people; facilitating access to vaccines; and providing support to both survivors and their families.

 

How did you maintain the belief and determination to continue going through difficult times with your son, Suelen?

 

Suelen: I believe that every process has a purpose, and with faith and perseverance we needed to make the decision not to focus on the reality (which was disastrous), but on what God could do through our efforts for João Marcos’s survival and rehabilitation.

For a 1% chance of survival, we had 99% faith.

 

Why did you choose to represent CoMO members on the Advisory Board?

 

Suelen and Antonio: Representing meningitis organizations gives us the opportunity to participate in determining strategies to combat the disease. In particular, being the voice of a region as large as Brazil and South America is a necessity. The way people view diseases is heavily dependent on local cultures. Combating meningitis in North America, Europe, Asia, Africa and South America has very different cultural, educational, socio-environmental and political aspects. The world is very diverse and access to information and public health, for example, varies greatly. Therefore, being the voice of our region, and highlighting aspects closely linked to the dynamics of our region within the construction of strategies, is absolutely necessary to achieve the WHO goal of defeating the disease by 2030.

 

What do you hope will happen in the world of CoMO / meningitis campaigns more generally in the coming years?⁠

 

Suelen and Antonio: The world has been transforming at an absurd speed. Unfortunately, not every transformation is sustainable. We hope that CoMO, through its strategic planning and campaigns, will provide a "warning cry" within this work of health education and sustainability. CoMO's work on the importance of preventing meningitis through vaccination and basic hygiene is fundamental in developing countries.

 

What do you both enjoy doing outside of work?

 

Suelen: I have my family as a priority, and I make the most of the moments I have with them. As a religious leader, I am often involved in collective meetings, personal counseling and other spiritual actions for the benefit of others. I also love music and travel whenever possible.

 

Antonio: My life purpose is to be a facilitator of people’s development. Improving the quality of life for people, their families and their workplaces is a daily concern for me. Therefore, I am involved in voluntary counseling work, linked to spiritual development and improvements in physical and intellectual well-being. I also like music, traveling and keeping fit.

 

 

John B. Grimes















What prompted you to get involved with meningitis advocacy?

 

My journey into advocacy began after I was sideswiped by meningitis, an illness that I miraculously survived despite my prior ignorance of its existence. Witnessing its wicked impact first-hand compelled me to get involved in raising awareness and supporting preventive measures. The lasting effects from my battle with meningitis are a daily reminder that fuel my desire to make a difference in the lives of others facing similar challenges.

  

How did you maintain the belief and determination to keep going through the most difficult times with the illness?

 

Surviving meningitis turned out to be the easy part—so easy that I'd done it in my sleep—eight days in a coma. The seemingly impossible part was living after surviving meningitis.

 

To sum it up in two words, my mindset became “Don’t wait”. But the shift didn’t happen overnight. It was really a series of events, experiences, trials, and errors that brought me face to face with the reality of my new life and the understanding that the filter through which I view my circumstances is 100% up to me.

 

Along my journey, I came to a profound realization: while support from others is invaluable, the ultimate responsibility for success rests solely on my shoulders. No one else can walk the path for me; it is mine alone to venture, my decisions to make, and my actions to take.

  

Why did you choose to represent CoMO members on the Advisory Council?

 

Excited about the ambitious journey outlined in the WHO Roadmap to Defeat Meningitis by 2030, I wanted to be a driving influence along the way. From my own experience, I understand the power of magnifying the collective stories and voices of our members. Together, we will wield our influence to shape policies at the highest echelons towards our shared goal of defeating meningitis.

  

What do you hope to see happen in the world of CoMO / meningitis advocacy more generally in the coming years?

 

I hope to witness greater inclusivity, engagement, and empowerment. Central to this vision is the imperative to seek out and connect with individuals whose lives have been touched by meningitis, offering them not just information, but also a supportive community where stories are shared, hope is kindled, and bonds of solidarity are forged. Through shared narratives and shared struggles, we can inspire hope and resilience, reminding each other that we are not alone in our journeys.

 

In the Americas region specifically, I envision the emergence of a more robust network comprised of our many advocacy organizations and individuals, working hand in hand to amplify their collective impact. Together, we will further cultivate a movement that transcends boundaries, united in our commitment to defeat meningitis and ensure a brighter, healthier future for all.

 

 What do you enjoy doing outside of work?

 

Outside of work, you'll often find me juggling three adorable Texas tornadoes—my daughters—who keep me and my wife on our toes and laughing non-stop. When I'm not dodging crayons or watching princess movies, I'm chasing my dream of becoming an author by telling the true tale of my extraordinary meningitis experience. I'm also the host of the podcast, Destiny Is Debatable, where I chat with fascinating people about how, despite adversity, they build their life into the one they want.

 

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I want to send a huge Thanks to John, Suelen and Antonio for being a part of CoMO for accepting their new role on our Advisory Council. Their unwavering passion for Meningits Awareness will prove to be an asset for CoMO. As Americas Coordinator I'm blessed and honored to have them by my side representing a strong alliance to fight for Meningits education, information and awareness. Patsy Schanbaum / Americas Coordinator

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