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We swim in the depths of darkness
the stream of light from above our only guide.
Others wait at the water’s edge
too afraid to do the hardest part
jump in.

We beckon from below
But by design they must
see for themselves.
Only when you are in the depths
is it known.

-k. thompson, Is It Known

Advocacy Updates…

This fall I decided to expand my meningitis advocacy efforts and joined two amazing organizations as a survivor advocate, the American Society for Meningitis Prevention (ASMP) and the Confederation of Meningitis Organizations (CoMO).

I recently had the privilege to attend advocacy training for ASMP in Delray Beach, FL. The trip was a very impactful, educational, and motivating. I returned home with a renewed sense of purpose in my advocacy efforts and a focused action plan to start 2025 with.

The organization’s founders Patti Wukovits and Alicia Stillman are sincerely two of my biggest heroes. Both lost their daughters Kimberly Coffey and Emily Stillman, respectively, from Meningococcal Meningitis B as teens. Building strength from their unfathomable losses, Patti and Alicia are determined to help others become aware of dangerous impact that meningitis can have and prevent further devastation to families. They both created their own individual foundations in memory of their daughters and then combined forces to create what is now ASMP.

For me as a survivor it is important to connect with others who have been impacted by meningitis. It may sound odd to say but it makes what I’ve been through more real in an emotionally validating way. Being able to connect with the only people who can truly understand the hell I’ve been through has carried me throughout my personal advocacy journey.

I also realized that I don’t often share just how much this disease still affects my life 20 years later. It’s made its mark from head to toe, and I think I have minimized this disease’s impact on my life both externally and internally as a survival mechanism. Hearing from other survivors how important it was to hear my experiences to help them better understand their own meant so much to me.

Being in a room with parents and grandparents who have lost children and loved ones to this disease is indescribable. It is heartbreaking to see their tears and hear their stories. To see their strength and resolve to help others while in the midst of their own grief is so powerful.

These families and their loved ones are the reason why I do what I do, why I am not afraid to stand before thousands and share my darkest moments. Despite what I’ve been through I don’t carry a fraction of the pain they’ve endured. Their loved ones aren’t here to share their stories, which makes sharing mine a responsibility that I take very seriously.

The biggest takeaway from the session for me was the importance of prevention and protection. I had no idea what meningitis was before I had it, it was some urban legend of a horrid disease rarely caught by college kids - or so I thought. Getting information in front of parents and young people to know the signs and symptoms and to know that there are vaccinations available will help save lives.

I really want to emphasize the point that it may be a small risk to contract meningitis but the potential consequences are too high and potentially fatal, so why take chances when there are vaccines available? It’s also important to know the signs and symptoms like a severe headache and stiff neck, and to get help right away. It could save a friend or a roommate’s life, or even your own. The American Society for Meningitis Prevention has an excellent website meningitisprevention.org that offers resources on meningococcal meningitis and vaccination information to talk with your doctor about.

In other news I am excited to share that I am a new Friend of the Confederation of Meningitis Organizations. CoMO is the international network connecting organizations, researchers, providers, and advocates for meningitis awareness from around the globe. I recently attended my first Americas Regional virtual meeting and I am incredibly excited to learn more and get involved in the work being done nationally and globally towards a meningitis-free world.

March 2025 marks 20 years since I contracted the disease, and I am still learning so much about meningitis and it’s impact on my life every day. I do know that without the love and support of my husband, family, and fellow advocates that I would not be able to do all of the advocacy work that I do. For me it’s an honor to be a survivor and to do this important work. I got a second chance, but not everyone does. I appreciate all of your continued support in my efforts to make the most positive change I can out of my experiences.

Thank you for reading,

Katie T.

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