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.
Meningioma Mommas is a 501 (c) (3) not-for-profit organization, which provides support and valuable resources to all those affected by meningioma brain tumors. We are dedicated to raising meningioma awareness and funding for meningioma specific research.
What We’re About
Meningioma Mommas is committed to raising critical funding for meningioma specific research. While meningiomas are the most common primary brain tumor, they don’t warrant the funding they deserve because of their mistakenly “benign” label. Meningioma Mommas is on a mission to change that and has donated $411,523 to date.
Who We Fund
Meningioma Mommas funds the work of Dr. Elizabeth Claus (Yale), Dr. Michael McDermott (UCSF), Dr. Greg Riggins & Dr. Gilson Baia (Johns Hopkins), Dr. John Lee (UPenn), Dr. Daniel Kelly & Dr. Garni Barkhoudarian (John Wayne Cancer Institute at Saint John’s Health Center), Dr. Randy Jensen (University of Utah) and Dr. Long-Sheng Chang (Ohio State University), Dr. Albert Kim (Washington University in St. Louis), Dr. Nader Sanai (Barrow Neurological Institute), Dr. Robert Martuza and Dr. Hiroaki Wakimoto (Harvard University and Massachusetts General Hospital), Dr. Melanie Hayden Gephart (Stanford University, Dr. Kevin Lillehei, Dr. Michael Graner, Dr. Debra Damek and Dr. Phil Tatman (University of Colorado) and Dr. Nader Delavari (NYU Langone).
The Brains Behind Meningioma Mommas
Liz Holzemer (left) is a freelance writer, author, and speaker.
Since she founded Meningioma Mommas in 2003, Liz has been honored with the Woman’s Day “Woman Who Inspire Us” award, the Tim Gullikson Spirit Award as well as Denver’s ABC “7 EveryDay Hero” and Denver’s NBC “9Who Care” awards. Liz has appeared on the TODAY Show, Discovery Health Channel’s “Mystery Diagnosis, and has been profiled on local television and in print media to share her story. She has presented for the International Congress on the Cerebral Venous System and Meningiomas, Johns Hopkins, Legacy Brain Foundation, National Brain Tumor Society, The Brain Science Foundation, The Brain Tumor Foundation, Brigham and Women’s Hospital, City of Hope, Hoag Hospital, Chamber of Commerce of Highlands Ranch, The American Association of University Women, Barnes and Noble, Tattered Cover, UCSF, The Leukemia & Lymphoma Society, Women in Networking, as well as brain tumor support gatherings.
Lindy Klarenbeek (right) is Meningioma Mommas’ Executive Director. She became involved with Meningioma Mommas while serving as a devoted and compassionate caregiver to her Aunt who battled seven meningiomas for the last 20 years of her life. Lindy is also the past president of Epilepsy Australia ACT, an organization that helped her tremendously during her son’s lifelong battle with epilepsy.
She resides in Australia where she runs a business with her husband while providing abandoned dogs a second chance at life. Her passion for volunteering includes advocating and raising awareness for dogs shelters, animal rights, the mentally ill, and senior citizens.
Liz’s Story and Message
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.
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.