What is Meningioma Mommas?

Monday, October 15, 2012
By, Liz Holzemer
“You have a meningioma.”

 

These four words forever changed me when I received a life-altering phone call before the sun had even risen one February morning. I was only 32 at the time and had dreams of becoming a mother. My dreams were shattered by this devastating diagnosis.

 

I had a baseball-size meningioma brain tumor and needed surgery immediately. Even after my two successful surgeries doctors remained skeptical that I’d ever become pregnant. But I did, and today I’ve been blessed with two healthy, miracle children.

 

When two of my neighbors were diagnosed with meningiomas shortly after my recovery I knew I had to act. Thus, my aha moment took hold.

 

I founded Meningioma Mommas in 2003 to soften the shock of what I call the “brain tumor journey.” When you first hear you have a brain tumor, you may fear it is a death sentence, but for me it was a life sentence.

 

Meningioma Mommas is an innovative 501 (c) (3) not-for-profit organization dedicated to meningioma support. In addition to valuable resources, we also provide a unique 24/7 online forum for patients, caregivers and family members affected by this disease. Our “second family” of “mommas” and “poppas” as we affectionately call each other, spans across the globe as well. We are a daily lifeline for so many or as one long term survivor recently shared, “I still log on every day—MM is a habit like brushing my teeth.”

 

Recognizing that meningiomas are understudied and underfunded, Meningioma Mommas made a commitment early on to funding only meningioma specific research. To date, we’ve donated $170,000 towards our $1 million lifetime goal. Because of previous generous donations, Meningioma Mommas’ top funded researcher, Dr. Elizabeth Claus was awarded a $5 million NIH grant earlier this year for the groundbreaking project “Genome-Wide Association Study of Meningioma”. Even more exciting is the fact Meningioma Mommas members are enrolling in the very study they helped to fund and secure.

 

Meningioma Mommas also expanded its reach by partnering with Epilepsy Australia and offers a dedicated Everything Epilepsy support forum. This partnership proved critical after noticing an increased number of meningioma patients also afflicted with epilepsy.

 

As the year draws to a close, Meningioma Mommas is setting its sights on further increasing meningioma awareness and playing a role in one day finding a cure.

 

-Liz Holzemer

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