Rare cancer came crashing into our family's life in May 2017 with an Adenoid Cystic Carcinoma (ACC) diagnosis of our 14 year old daughter three weeks before the end of her freshman year of high school. She was treated at Memorial Sloan Kettering (MSK) with a 10+ hour surgery to her face and neck along with preventive reconstruction which left a 10" long scar across her back. All of this was followed by 6 weeks of proton radiation that caused our family to relocate for this specialized treatment.
When we came to MSK where we figured they would know something about her cancer because they were one of the world's best cancer centers. It turned out they knew very little because there had never been a child diagnosed with ACC in MSK's recorded history.
That's when this mom's maternal instinct to protect my child kicked into high gear. With no standard of care, cure, or even any research on the kids diganosed with ACC, I decided to start asking questions and doing a lot of research myself with the goal of getting research done on the behalf of the patients originally diganosed as children with ACC.
In September 2017 ACCKT | Adenoid Cystic Carcinoma Kids + Teens was founded and in 2018 we were given the opportunity to take part in Cycle For Survival to fundraise in order to become a part of the Make-An-IMPACT program which would result in the first ever study exclusively made up of pediatric onset ACC patients.
Within days after Cycle For Survival 2018 closed, we had an approved IRB for our research.
RESULTS FROM 2018
$40,000 RAISED initiated and resulted in the inclusion of Pediatric ACC in the Make-An-IMPACT program at MSK with 10 patients consented and provided genetic testing as of November 2018.
FUNDRAISING FOR 2019
With our growth and taking our team national, we plan to continue supporting pediatric ACC research through the Make-An-IMPACT program as well as support additional ACC research at MSK including clinical trials and studies in salivary and lacrimal gland ACC.
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ACCKT & Team ACCelerate
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