Partnership Spotlight - cureMEC: the Myoepithelial Carcinoma Project
Photo of Sebas with logos for cureMEC and The Rare Cancer Research Foundation. Image credit: Naomi Natale.
The Rare Cancer Research Foundation is honored to have a wide range of strong partnerships with organizations that are working to propel research and therapeutics for rare cancers forward. In this piece, we highlight cureMEC, a partnership formed in 2024. For more information on cureMEC, please visit https://www.curemec.org/
In the fall of 2021, when Sebastián Casaus Natale—affectionately known as Sebas—was just two years old, his parents, Michael and Naomi, discovered a lump on his left hand. After an ultrasound and a consultation with a pediatric orthopedic surgeon, it was recommended that the lump be removed and biopsied. Sebastián underwent surgery, and after four excruciating weeks of waiting for pathology results, an oncologist called with devastating news: Sebastián had been diagnosed with Myoepithelial Carcinoma (MEC), an ultra-rare and aggressive cancer. That same day, the family was admitted to the hospital, where doctors urgently began preparations to start chemotherapy. A CT scan of Sebas’ lungs revealed 11 nodules—evidence that the disease was metastatic and had already spread.
“From the very first conversation with our oncologist, we quickly realized that our doctors didn’t know anything about MEC. No one in our state had ever heard of it let alone treated it before. We quickly learned that this cancer had never been studied, and nobody was actively studying it,” Michael Casaus, Sebas’ father, said.
Michael and Naomi were faced with a new reality and immense grief that many rare cancer patients and their families experience: information is limited and there is no standard treatment for Sebas’ disease. With few options, Sebas underwent 10 grueling rounds of chemotherapy, which ultimately didn’t work.
In the spring of 2022 and in the thick of his treatment at Lucile Packard Children's Hospital Stanford, they both decided to create cureMEC: the Myoepithelial Carcinoma Project, a nonprofit organization in honor of Sebas’ ongoing fight and the mission to find a cure. The organization aims to raise funds for MEC research, connect with researchers who may be interested in studying it, increase awareness about the disease and foster community with others impacted by MEC, and advocate for better funding for childhood cancer research on Capitol Hill. Ultimately, the hope is that their work will facilitate the development of a standard treatment and eventual cure for MEC.
“We learned that only 4% of the National Cancer Institute’s budget was going to childhood cancer research, and when it comes to rare cancers, it is virtually no money…we knew we had to raise money any way we could. But even beyond that, we also had to find researchers who would be willing to study MEC,” Michael said.
At the end of 2022, Sebas had a second recurrence and underwent double lung surgery to remove five nodules. The surgeon was able to remove four of them, but one was left behind. Since then, follow-up CT scans have revealed new nodules, and as of now, his doctors are closely monitoring four small ones in his lungs. These nodules are currently too small to remove, but thankfully, have remained stable since March 2024.
In 2024, cureMEC experienced a milestone when Michael and Naomi were connected to Barbara Van Hare, Head of Partnerships for The Rare Cancer Research Foundation.
“She really has brought so much hope into this work,” Naomi said. “She’s the force that set us on this path. We told her we were looking for researchers and she was willing to facilitate those conversations.”
Barbara was able to connect Michael and Naomi to Dr. Brian Van Tine, a researcher at the John T. Milliken Department of Medicine at Washington University in St. Louis.
“He said that this was something he may be willing to take a look at, so through Barbara, that initial meeting was put together,” Naomi continued. “It’s really beautiful to watch someone in their element, and you could tell as the meeting went on that Dr. Van Tine started to get ideas of how he would study it and approach it.”
In 2024, through its partnership with cureMEC, the Rally Foundation for Childhood Cancer Research awarded a $50,000 Out-of-the-Box grant to Dr. Van Tine and his team to support their research on MEC. This opportunity was made possible thanks to that initial connection to Dr. Van Tine from the Rare Cancer Research Foundation. The team is now focused on studying proteins on the surface of MEC cells, with the goal of identifying more effective therapeutic targets.
“We’re really impressed with RCRF and Pattern.org’s mission and the role they play in connecting with patients to submit their tumor samples for research,” Michael said. “It’s because of Barbara’s kindness and relationships that we’ve been able to partner with Dr. Van Tine and others that she’s connected us to, including the Broad Institute of MIT and Harvard… and if our research on MEC can be applicable to other rare cancers, it’s an amazing opportunity.”
Today, Sebas receives routine scans to monitor his hand and the nodules in his lungs, and the future remains uncertain. However, when asked what his superpower was in a Make A Wish Interview last year, he was proud to say, “My superpower is happiness.” Despite all he has gone through and continues to go through, his bright light remains and is an inspiration to so many.
