Guest Blog: A Quest for Cures, Twenty Years in the Making

Some Things Change, Some Things Stay the Same

It has been 7 years since I joined the National Brain Tumor Society and wrote the blog post below in 2018 to introduce myself and my story. It’s incredible how much can change and how some things remain constant, anchoring us through it all.

Since my last update, life has moved forward in big ways. We welcomed another child, William, into our family, filling our home with even more love and laughter (and chaos!). I got divorced. My mom moved up from Florida to be closer to us, a decision that has meant the world, both practically and emotionally. She and I bought a house that finally feels like home. And on the professional front, I was promoted into a new role at NBTS as the Director of Philanthropic Giving working with our donors to connect them to our community in a meaningful way. 

But amidst all that change, some things haven’t shifted at all.

Every year, approximately 13,000 people in the U.S. are diagnosed with glioblastoma (GBM), the most aggressive form of brain cancer. That number hasn’t gone down. And every year, I meet more families walking the same heartbreaking path my family has been on. The faces are new, but the stories are painfully familiar: the uncertainty, the fear, the fight, the love.

I’ve connected with countless families over these years parents, siblings, spouses, children, all navigating this brutal diagnosis with courage and hope. Their strength continues to inspire me.

As we recognize Glioblastoma Awareness Day, I hope you’ll join me in honoring those we’ve lost, supporting those still fighting, and pushing for research that brings us closer to a cure.

Because while some things change, some things shouldn’t have to stay the same.

Rachel’s 2018 Guest Blog Post:

August 9, 2016 is the last time I saw my wonderful, kind, caring, lovable, singing-in-falsetto, Boston-sports-loving father alive. On August 11, he passed away at the age of 69 after being diagnosed with a glioblastoma (GBM). Sadly, this was not my first experience with GBM.

Twenty years earlier, my maternal grandfather was taken by this terrible disease. He was also 69 at the time of his passing. Both men had a huge impact on my life and were taken far too soon. They received the same diagnosis, had virtually the same treatment plan, and as a result, unfortunately, had the same outcome, as well.

For those of you who’ve been in the fight against brain tumors for some time now, this likely isn’t all that surprising, unfortunately. The statistics are well-known in the brain tumor community: There are only four drugs, and one device, approved for the treatment of brain tumors, and there has been little progress in improving survival rates in more than four decades. Yet, it still came as a most-unwelcome shock for me and my family.

Compounding my sorrow, was the fact that when my dad passed away I was three months pregnant with my son, whom I named after both him and my grandfather. Douglas Elliott Schultz is named for the two most important people in my life; both taken by the same “rare disease.” Taken from me; taken from my son.

Once I came out of the blur and roller coaster of post-pregnancy bliss, juxtaposed with the grief from my dad’s loss, I realized I couldn’t sit back and do nothing. I needed to help accelerate research to more quickly find better treatments and cures.

By chance, my mother had actually previously worked at the National Brain Tumor Society and helped produce some of the amazing Brain Tumor Walks and Rides the organization hosts around the country to support brain tumor research and public policy advocacy. Thus, I was familiar with the organization and its mission and felt compelled to check its website (braintumor.org) to see how I could become more involved. I was surprised to see there was actually an open position to become the Regional Director of Development for New England, in charge of the Rides, Walks, and Freezes in the area. Having spent the past 14 years working for philanthropic organizations that served the Jewish community, it seemed “besheret,” or “fate,” that this position matching my professional experience and personal convictions would be open at exactly the moment I came looking to get more involved in the brain tumor fight.

It sounded almost too serendipitous to be true. Yet, now four months into my employment at NBTS, I’m privileged and honored to work with the brain tumor community every day.

I am surrounded by passionate volunteers, advocates, survivors, caregivers, a brilliant staff and have been welcomed into a community that none of us want to be a part of, but once we’re here, are welcomed with open arms, compassion, empathy, and lots of hugs!

So, thank you. Thank you for welcoming me to this community, for helping me on my personal mission – and NBTS’s mission – to find better treatments and cures for brain tumors. I hope you’ll consider joining me at one of the signature or community NBTS events around the country this fall, so we can, together, raise money and awareness for brain tumors together, and make sure no one has to lose a loved one to this horrible disease. And, if you’re in the New England area, coming out to one of our local events and introducing yourself. I’d love to meet you!

TAGGED WITH: brain cancer, brain tumor, GBM, glioblastoma, glioblastoma multiforme, Community, brain tumor community, Defeat GBM