My name is Amy Heller and I am the founder of ACCKT | Adenoid Cystic Carcinoma Kids + Teens. My daughter was diagnosed with ACC in May 2017 at the age of 14 of the parotid gland. She had three surgeries and 33 proton radiation treatments through Memorial Sloan Kettering Cancer Center (MSKCC) in NYC. She’s about to start her junior year of high school and is thriving, but we know that this cancer is a lifelong journey that will require thorough monitoring throughout her life. I share her story because it was her diagnosis and my own frustration with the lack of information and research on kids and teens diagnosed with ACC that I started ACCKT to help others in our same situation.
It happens that I am friends with with the chair of cancer research at MSKCC Dr. David Solit and his wife Barb. It was through their own experience of having a child with a very rare cancer that they started a research program called the Make-An-IMPACT initiative at MSKCC. The initiative provides world-class genetic testing (MSK-IMPACT) free of charge to patients of select rare cancers, like ours; those originally diagnosed with ACC as a child or teen and who have been treated with original diagnosis or re-occurrence/metastatic disease within the last 5 years. Ordinarily this kind of testing could cost upwards of $5,000+ through places like Foundation Medicine, but through our fundraising (we’ve worked VERY hard and cycled a LOT of miles!) we’ve established a fund that will pay for this testing for free for pediatric ACC patients.
The test will do several things:
1. It will provide you and your family with realtime results of the genetic testing of your tumor, unveiling mutations (if there are any). If there are treatable mutations, you and your physicians will be notified, thus opening up the possibility of new treatment options based on individual mutations. Results typically are available within 2-6 weeks after the start of testing. 2. It will provide scientists with more information to guide them towards more effective treatments in the future. 3. It will provide scientists and physicians with the first ever data collected exclusively on pediatric population of ACC patients, and the ability to determine any differences between it and the more typical, but also very rare adult onset ACC. 4. It may even provide new information in cancer research as a whole. Our program just needs patients. Our study coordinator/clinical trial nurse at MSKCC, Bernadette Wolf handles the entire process once I recommend a patient via email to her. Her assistance makes the process as simple as possible to take part. Patients will receive a packet from MSKCC that includes a vial to collect a blood sample for DNA matching, to be sent back via Fed Ex/UPS. You will also have a phone consultation before you consent to the study and one after to review the results. So far, nearly 20 patients have consented to participate in 2018 so we are off to a good start to helping all kids/teens diagnosed with ACC and providing more personalized treatments for the future.
I know this is a lot to take in but I hope that you have read all the way through. Here are some links you can check out about ACCKT as well as our research. Please know we are not widely “advertising” this in all ACC groups, because we can only offer it to our pediatric onset population at this time.
If you feel you may fit these criteria, for our research, or even if you are looking for support of others who have also had to navigate this incredibly rare diagnosis as a child/teen we hope that you will consider joining our research and our ACCKT community for peer support and resource sharing. Please do not hesitate to contact me with questions or more information. Our entire community is here for you to let you know, you are not alone and we are working very hard for the futures of all kids/teens diagnosed with ACC.
With the warmest regards, Amy Heller
……………………………………………………………………………………………………………………… ABOUT OUR RESEARCH