JOIN THE BATTLE. GIVE TO BEAT RARE CANCERS.
We Ride For Our Amazing Teenage Daughter, Lauryn.
Lauryn was diagnosed with Adenoid Cystic Carcinoma (ACC) in May 2017 at the age of 14 years old only weeks away from finishing her Freshman year in high school. In the first weeks of her summer vacation, she underwent a 10+ hour surgery at MSKCC that included removing her entire parotid gland from the right side of her neck and face, a neck dissection where 14 lymph nodes were removed and a free flap reconstruction of about 9" of skin, muscle and fat that was removed from her back and microscopically replaced into her neck and cheek to fill in the space where her gland was. After healing, she underwent 33 proton radiation treatments 5 days/week for 7 weeks 100 miles from home. It was not the summer that any teenager would want, but she was amazing and never once complained. She finished treatment on a Friday and was back in school after missing the first 3 weeks of her Sophomore year, on the following Monday. Like I said, she is amazing. She is a high honors student and attends her local high school as well as one of New England's premiere fine arts magnet high schools 40 miles from home.
About Adenoid Cystic Carcinoma (ACC)
ACC is a very rare cancer impacting only about 1,200 patients/year typically in the 5th-7th decades of life. It is a slow growing but tenacious cancer that travels along nerves and has a very high rate of distant metastasis to lungs, liver, brain and bones. It is treated as a chronic disease after initial surgery and/or radiation treatment with life-long monitoring required due to it's propensity to reoccur locally and metastasize years after initial treatment.
We Ride For The Pediatric ACC Community
Pediatric onset ACC makes up only a minute fraction of the total diagnosed with ACC. Because of this, up until this point, there has been no research done exclusively on the pediatric population diagnosed with ACC. As parents, our frustration with the lack of information and seeming disinterest in understanding more about these kids was the catalyst to start "collecting" parents and patients originally diagnosed as kids/teens whom we found in other ACC communities by starting two closed FB groups for peer support and resource sharing. From the original 5 or so patients, we've been able to track down over 20 in just a few short months. It is from these groups, that we are now able to get the first ever studies done on this small but mighty population.
We Ride For Them: Lauryn | Mackenzie D | Mackenzie G | Eric | Blair | Charelle | Caitlin | Kayla | Shane | Tanya | Rachel | Ammar | Thomas | Emily | Enzo | Alicia | and several more.
MSKCC Make-An-IMPACT Program
I was fortunate to meet Barb Solit, wife of Dr. David Solit, Geoffrey Beene Chair; Director, Marie-Josée and Henry R. Kravis Center for Molecular Oncology who recommended that Lauryn's cancer type might be a good fit for the Make-An-IMPACT program. After speaking with Dr. Solit and his reviewing Lauryn's case and genetic test results, he also felt Pediatric ACC is a perfect fit for the program.
Which bring us to Cycle For Survival. I am fortunate to be on the Solit's fundraising team and Dr. Solit has guaranteed that all money that I raise through our bike's fundraising effort will go 100% to having our first set of Pediatric ACC patient tumors researched. It costs $2k per patient to have this testing done. We have over 20 patients in our group currently. We have patients who were diagnosed as children and teenagers who are currently dealing with mets to the lungs and more, and they are struggling. They need this testing done soon. The current kids and teens in our group need this testing done so that if/when their disease comes back they have a better chance of beating this potentially lethal reoccurence. These are kids that deserve to be researched and have the best chances for quality of life and a long future ahead of them.
Please join me in this fight by making a donation. It's something we can all do to make a difference for those battling cancer.
Here’s how your gift will make an impact:
50% of People with Cancer Have a Rare Cancer
When combined, rare cancers make up approximately half of patients fighting cancer. Rare cancers—such as leukemia, lymphoma, thyroid, ovarian, pancreatic, and pediatric cancers—are diseases we all know. These patients often face little to no treatment options because rare cancer research is underfunded.
100% Goes to Lifesaving Research Led by MSK
Cycle for Survival is the movement to beat rare cancers. Every dollar you give will advance innovative research and clinical trials led by Memorial Sloan Kettering. This work has the power to revolutionize how cancer is diagnosed and treated worldwide.
6 Months for Fast Impact
Your gift will be in the hands of doctors and researchers within six months of the events. There’s no time to waste: with your help, new discoveries will be made each year.
Thank you for your support!
The Heller Family and the entire Pediatric ACC community