JOIN THE BATTLE. GIVE TO BEAT RARE CANCERS.
I’m riding and raising money for rare cancer research. Will you help me make a difference by donating?
OUR RARE CANCER STORY
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 24 patients from 7 countries around the world 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.
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.
At the end of the day, I'm trying to save my daughter's life. I will do whatever that takes and I would be so appreciative if you'd consider making a donation towards our research for her and the other kids fighting this horrible disease.
Your gift can give people with rare cancers a better future through new and improved treatments. Since 2007, Cycle for Survival supporters have provided resources to hundreds of doctors and scientists to pursue bold ideas that have led to the FDA approval of new drugs, lifesaving clinical trials, and four state-of-the-art DNA sequencers that are aiding in key cancer discoveries.
50% of People with Cancer Have a Rare Cancer
Did you know that, when combined, about half of all patients fighting cancer are fighting a rare cancer? These are cancers you’ve likely heard of — such as leukemia, lymphoma, thyroid, ovarian, brain, pancreatic, and all pediatric cancers.
100% of Your Donation Supports Research
Every dollar you give funds innovative studies and clinical trials led by Memorial Sloan Kettering Cancer Center (MSK). Discoveries made by MSK revolutionize how cancer is diagnosed and treated, helping patients everywhere.
6 Months for Fast Impact
Rare cancer research is underfunded, and too often people don’t have proven treatments. Time matters. Your gift will be in the hands of researchers six months after fundraising ends and, as a donor, you will learn about the projects supported.
Mom of Lauryn
National Team Captain, Team ACCelerate
Founder, ACCKT | Adenoid Cystic Carcinoma Kids + Teens