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ADVOCACY WORK

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NATIONAL BRAIN TUMOR SOCIETY (“NBTS”)

WEBSITE: http://www.braintumor.org

I discovered NBTS just after my diagnosis and first brain surgery in 2014.

I knew NOTHING about brain cancer. Yet, here it was turning my life upside down and inside out.

I needed information, but via a legitimate source. No WebMD for me.

Well, I stumbled upon this incredible organization and have worked tirelessly as a fundraiser, a member of the NYC Walk Planning Committee, served as both Chair and Co-Chair of the Walk and have served in various other roles since 2014.

Why NBTS?

[NBTS] UNRELENTINGLY INVESTS IN, MOBILIZES, AND UNITES OUR COMMUNITY TO DISCOVER A CURE, DELIVER EFFECTIVE TREATMENTS, AND ADVOCATE FOR PATIENTS AND CARE PARTNERS.

http://www.braintumor.org

Basically, NBTS works directly with legislators and clinicians to ensure brain tumor research gets more funding, which is desperately needed! The organization truly cares about patients and families affected by this disease.

The CEO and Members of the Board have personally reached out and helped me so much throughout my battle.

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Working With NBTS

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• 2015 Patient Advocate Speaker at New York City Walk 5-year Celebration
• 2016 Co-Chair & Speaker at New York City Walk
• 2018 Chair & Speaker at New York City Walk
• 2018 Patient Representative Attendee at New York City Panel on “Breakthroughs In Brain Tumor Treatments
• 2019 Patient Representative Attendee at the Inaugural Reception for “National GBM AWARENESS DAY” on Capital Hill

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• Multiple awards for New York City’s Walk as “Top Individual Fundraiser”
• Recognized as a:

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• 2020 “virtual” representative for Head To The Hill, a full day of advocacy on behalf of NBTS directly to members of Congress requesting more funding towards brain tumor research and more awareness

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MSKCC’s CYCLE FOR SURVIVAL

Cycle For Survival is a movement! It’s not just some indoor cycling event to raise $ for rare cancer. It is so much more!

https://www.cycleforsurvival.org/2020. This video really shows what Cycle is all about.

WEBSITE: https://www.cycleforsurvival.org

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Cycle for Survival unites families, friends, and colleagues in the fight against rare cancers. Over 37,000 people ride in Cycle’s signature indoor team cycling in Equinox studios all across the U.S.

100% of every dollar supports pioneering research and lifesaving clinical trials dedicated to rare cancers led by Memorial Sloan Kettering Cancer Center (MSK).

Within six months after the close of fundraising each year, the money raised by Cycle for Survival riders and donors goes directly to MSK doctors and scientists, fueling bold ideas and breakthroughs.

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Since it’s inception 14 years ago, Cycle has raised over $260 million ALL for rare cancer research.

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MY WORK WITH CYCLE

I serve as a proud spokesperson for Cycle for Survival. I have spoken at numerous events, mostly before hundreds of attendees.

However, I’ve also served as a “patient representative” at intimate meetings with donors and major sponsors, like New Balance®.

Also, I have worked with Cycle’s media coordinator while speaking to various media outlets.

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2015

My first Cycle ride in 2015 was only a few months before my recurrence was confirmed. However, it was suspected.

Nonetheless, I gave one of the bravest speeches of my life… literally the day before a spinal tap, and knowing there was probably another tumor growing inside my brain.

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I look back at the video of that speech and I barely recognize myself.

That girl had NO IDEA what she was up against!

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2018

I was honored to give the closing speech at my last in-person event.

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It’s humbling to give these speeches.

In fact, a friend was at the hospital doing some kind of volunteer training the day after our 2018 Ride.

The man running the training actually brought up my speech.

He told the group “it was the most inspiring speech he had ever heard in all his 10 years of attending the event!”

Now, that brings tears to my eyes!

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Our 2019 ride was canceled due to COVID. This year. Same thing. It’s best for everyone’s safety. #thanksagainCovid

Please God, let me be able to ride again!

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2016-Patient Speaker

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2017-The Kick-off in Times Square

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On a rainy day in the middle of Times Square, I spoke before hundreds about my story. My wig did not appreciate the rain!

The sun eventually came out though. ❤️