cureMEC: the Myoepithelial Carcinoma Project launches the cureMEC Biobank powered by pattern.org
Biobank logo.
cureMEC: The Myoepithelial Carcinoma Project is a nonprofit organization dedicated to raising funds and advancing research and education initiatives to discover new treatments and, ultimately, a cure for myoepithelial carcinoma.
Myoepithelial Carcinoma is an ultra-rare cancer of children, teenagers, and adults that can occur in the salivary glands, kidney, and from soft tissue like muscle. cureMEC was founded in 2022 to honor Sebastián Casaus Natale, who was diagnosed at the age of two and continues to bravely fight while cureMEC fights for him and others like him.
In a major milestone, cureMEC is proud to announce the formation of the ‘cureMEC Biobank powered by pattern.org.’ In collaboration with RCRF’s pattern.org, cureMEC is now collecting and securely maintaining donated tumor tissue, blood samples and related clinical information to support cutting-edge research for MEC.
Beyond storing samples, a major goal of this effort is to create research models directly from patients’ tumors — such as MEC cell lines and PDX models. A cell line is a group of cancer cells taken from a patient’s tumor and grown in a lab. Because they keep growing, researchers can study them over time and test how the cells respond to different drugs. In a similar vein, a PDX model is created when a small piece of a patient’s tumor is placed into a special mouse, where it can grow and be observed.
These models help scientists test new treatments, better understand the disease and move discoveries toward real patient impact.
All samples are obtained through rigorous informed consent processes, stored using best-in-class scientific standards and shared only with vetted investigators committed to advancing care for patients with MEC.
“Partnering with RCRF’s pattern.org has been transformative,” said Naomi Natale and Michael Casaus, co-founders of cureMEC.
“Together, we have built the world’s first MEC Biobank and Data Commons — a resource powered by patient participation. This effort is giving researchers the tissue and data they’ve never had before. We often say, one sample can change everything, and it’s true. Each individual sample helps reveal patterns that point researchers toward new insights and new potential therapies.”
Through tissue and data donation, the MEC community is helping to transform rare patient experiences into the scientific insights needed to drive real therapeutic progress.
