Why the funny name?!
When I was first diagnosed, I had great difficulty pronouncing meningioma, let alone spelling it. And even though my doctors were skeptical I’d ever become pregnant, I did. My meningioma didn’t stop me from continuing my roles as wife, daughter, sister, friend, writer…and ultimately, becoming a mom. For me, surviving a meningioma has given me a second chance at life and a voice to increase awareness about this all-too-often dismissed tumor.
Our Mission
Meningioma Mommas is a 501(c)(3) nonprofit organization dedicated to supporting those affected by meningioma brain tumors and their caregivers. We provide resources and a community for patients and their families, empowering individuals to be their own best advocates as they navigate their meningioma journey. Our mission is not only to fund meningioma-specific research but also to ensure that everyone impacted—patients, caregivers, and loved ones—has the tools, support, and knowledge to take charge of their health and recovery.
What We Do
Meningiomas are the most common type of primary brain tumor, but they remain severely underfunded due to their misleading “benign” label. Meningioma Mommas has been working tirelessly for over two decades to change this narrative. We raise critical funds through community support and strategic partnerships, directly contributing to advancing research and improving treatment options. Along with funding research, we provide vital support for patients and caregivers, ensuring they have the resources they need to advocate for themselves and their loved ones.
Who We Fund
Since our founding, Meningioma Mommas has donated $520,000 to support meningioma research at leading institutions and hospitals such as Harvard University, Johns Hopkins, Mass General Hospital, Stanford, UCSF, and Yale, among others. These funds have empowered researchers to explore innovative treatments and work toward a cure for meningiomas.
Meet the Minds Making Meningioma Mommas Matter
Liz Holzemer (left) is the founder of Meningioma Mommas, a freelance writer, author, and speaker. Since establishing the organization in 2003, Liz has been honored with numerous accolades, including the Woman’s Day “Woman Who Inspire Us” award, the Tim Gullikson Spirit Award, and Denver’s ABC “7 EveryDay Hero” and NBC “9Who Care” awards. Liz’s story has reached a broad audience through appearances on the TODAY Show, Discovery Health Channel’s “Mystery Diagnosis,” and various local television and print media. She has also had the privilege of presenting at prestigious events like the International Congress on the Cerebral Venous System and Meningiomas, Johns Hopkins, National Brain Tumor Society, Brigham and Women’s Hospital, and UCSF, among others. Liz continues to inspire others with her work, dedication, and advocacy.
Lindy Klarenbeek (right) serves as the Executive Director of Meningioma Mommas. Her journey with the organization began as she supported her aunt, who battled seven meningiomas over the last two decades of her life. Lindy’s personal experience as a compassionate caregiver fuels her passion for helping others in similar situations. She is the past president of Epilepsy Australia ACT, an organization that supported her during her son’s lifelong battle with epilepsy. In addition to her work with Meningioma Mommas, Lindy runs a business in Australia with her husband and dedicates her time to rescuing abandoned dogs, advocating for animal rights, and raising awareness for mental health, senior citizens, and other causes close to her heart.
Liz’s Journey and Vision
Meningioma Mommas is a lifeline, which grew out of an overlooked need for those stumbling around in the dark after being delivered a shocking four word sentence, “You have a meningioma.” We are an alternative to the grim statistics, numbers, and percentages all-too-prevalent on the internet. Whether you are newly diagnosed, a veteran survivor, a “momma”, a “poppa”, or a caregiver, you will never be alone on your meningioma journey.
Each of us has an inner voice.
Mine spoke up very loudly 20 years ago and urged me to listen to my body’s signals that something was awry. My inner voice urged me to ask my doctors why I was having frequent migraines. Why I heard swishing in my ears that sounded like waves crashing on the beach. Why I experienced deja vu sensations. Why I couldn’t become pregnant.
Instead of finding answers, I was dismissed.
Told I was female.
Stressed.
Hormonal.
That is was all in my head.
As a journalist, I had to continue my investigating and find the missing piece to this baffling puzzle. My inner voice and gut instinct finally convinced doctors to order an MRI.
The MRI results delivered the most devastating news of my life — I had a meningioma brain tumor the size of a baseball pressed up against my right optic nerve, carotid artery and sinus cavity. My neurosurgeon was stunned I’d even walked into his office or hadn’t already slipped into a coma. My journey continues in Curveball: When Life Throws You a Brain Tumor, available on Kindle and the Nook.