Welcome to Team ACCelerate’s National Team Page!
My name is Amy Heller and I’m the National Team Captain for Team ACCelerate. We are so glad you here to learn more about our team and how we are ACCelerating Research in Adenoid Cystic Carcinoma.
In May 2017 my 14-year old daughter was diagnosed with Adenoid Cystic Carcinoma (ACC), a very rare head and neck cancer. She was treated at Memorial Sloan Kettering Cancer Center, having three surgeries and 33 rounds of proton radiation therapy.
When our daughter was diagnosed my husband and I found no research or information regarding children diagnosed with ACC. When we decided to go to MSK we figured they would know something about her cancer based on their stellar reputation in cancer research and large pediatric oncology department. As it turned out they knew very little because there had never been a child diagnosed with ACC at MSK.
Forced to face the reality of just how rare her cancer was and that she was going to be treated with the same protocol given to adults with this cancer my maternal instinct to protect my child kicked into high gear. With no standard of care, no cure, an no research specific to the kids diagnosed with ACC I decided to start asking lots of questions and doing a lot of research on my own. During this time I leveraged social media and found a large handful of families/patients around the world who were originally diagnosed with ACC between the ages of 0-20 years old (pediatric age).
While our daughter was still undergoing radiation treatments in September 2017, I founded ACCKT | Adenoid Cystic Carcinoma Kids + Teens to serve as a resource to the small pediatric ACC community that I was discovering. Just three short months later, we were given the opportunity to become a part of the Make-An-IMPACT initiative at MSK starting the following spring. To do that it would require raising funds through Cycle For Survival. We needed to raise $40,000 in just three and a half months. Somehow we did it. Within days after Cycle For Survival 2018 closed we had an approved IRB for our research through the Make-An-IMPACT program. That first year resulted in the initiation of the first ever study exclusively compiled of pediatric onset ACC patients.
To date, we’ve referred 23 patients to our Make-An-IMPACT program for genetic testing. Ten of those patients have received their test results and several more are in the testing process now. Patients have come from six different countries around the globe and we have both male and female patients.
Team ACCelerate’s first priority is to continue funding the ongoing study of pediatric onset ACC through the Make-An-IMPACT program at MSK. Additionally we are excited that our growth is allowing us to also allocate funds to other ACC research taking place at MSK.
2018 - $40,000+
Riders in New York City
• Initiated and resulted in the inclusion of Pediatric ACC in the Make-An-IMPACT initiative
2019 - $60,000+
25 Riders in Seattle, Chicago, Huntington Beach, New York City
• Continued funding for Make-An-IMPACT Pediatric ACC study
• Allocation of funds towards Dr. Alan Ho’s ACC clinical trial and research
Total - $100,000+ in two years for ACC research!
30+ Riders in Seattle, Chicago, Huntington Beach, New York City + ATLANTA!
This year we have over 30 riders in 5 cities and we are still growing! Two years ago we had just three riders in New York City so our growth is has no bounds for 2020!
If you’ve found yourself on this page, you’re ready to JOIN THE BATTLE with Team ACCelerate! You can expect a party on a bike like you’ve never imagined, an emotional high like you’ve never experienced, and a day you’ll never forget.
Thanks for supporting our team.
Founder, ACCKT | Adenoid Cystic Carcinoma Kids + Teens
National Team Captain, Team ACCelerate
JOIN THE BATTLE.