RARE Partnership in Advocacy, Funding, and Research for Gastrointestinal Stromal Tumor

It’s no secret that rare families are the driving force behind many rare disease diagnoses and drug development efforts. A self-described “mother on a mission,” Debra Melikian has entered into a unique partnership with RARE Champion of Hope Honoree, Dr. Jason Sicklick. Together, they’re working to find a cure for succinate dehydrogenase-deficient gastrointestinal stromal tumors (SDH-deficient GIST), a hereditary rare cancer syndrome that has claimed the lives of both Debra’s husband and her son Merak.

For GIST Awareness Day on July 13, Debra and Dr. Sicklick sat down to discuss how they will continue enacting change, raising awareness, and working towards better treatments for SDH-deficient GIST.

Debra Melikian and Dr. Jason Sicklick at UC San Diego Moores Cancer Center

In the four years since Debra Melikian began raising funds for GIST research being done at University of California San Diego’s Moores Cancer Center, they have developed new human cell lines, identified several new drug treatments for investigation, and launched a clinical trial. You may be wondering how she has managed to drive SDH-deficient GIST research forward so quickly in such a short amount of time. The short answer is: through a close professional relationship with Dr. Sicklick, translational scientist and cancer surgeon at UC San Diego and 2018 RARE Champion of Hope Honoree.

Debra first became involved in the world of rare disease in 2013 when her husband was diagnosed with an SDH-deficient tumor. While he was being treated in Los Angeles, their son Merak was “living his dream, attending college in San Francisco, when he suddenly developed symptoms.” Just one year later, he was diagnosed with a hereditary cancer related to his father’s, and Debra knew it was time to up her advocacy game.

After their fortuitous meeting at The Life Raft Group’s GIST Day of Learning Conference in 2015, Debra later reached out to Dr. Sicklick for help and advice once her son’s condition began to worsen. Together, Dr. Sicklick and Debra have synchronized their missions and forged a unique partnership that has yielded unprecedented success in SDH-deficient GIST research.

“I remember coming into your office and saying: I know there’s no cure for this right now, but what do you need from me and how can I help you get what you need in order to save my son’s life?” -Debra Melikian, GIST Advocate

According to Dr. Sicklick, there are only around 200 people a year who are diagnosed with SDH-deficient GIST. As so many rare disease patients know so well, this small size of patient population makes it extremely difficult to justify dedicating money and resources towards research. However, Dr. Sicklick believes that there is reason to hope for substantial change in this mindset. “What’s different about SDH-deficient GIST is that young people are most commonly affected. People in the primes of their lives are suddenly afflicted with a cancer that we have no treatment for, and that could potentially take their lives. It’s incredibly frustrating as a physician, to look at them and to know that you don’t have anything great to offer them.”

Merak Melikian Hatounian coming to podium to speak at first fundraiser Lighting the Path Forward for GIST Cancer Research 2016. Photo is Courtesy of Jeremi Peck Photography

The first step in finding new approaches for treating Merak began with Debra’s initial fundraiser and awareness event, Lighting the Path Forward for GIST Cancer Research in 2016. Once she learned that fundraising and advocacy were what held the most hope for helping her son, Debra dedicated herself to the mission and managed to raise enough money to fund Dr. Sicklick’s initial research. She says “at that time, I knew it wasn’t just about raising money. It was to help fund and find a cure. That has always been my focus.”

Dr. Sicklick accredits this initial funding to the major strides that he and his team were able to make in a short amount of time, saying “our drug discovery efforts using Merak’s tumor cell for research began to snowball… this philanthropic support led to the initial findings that provided the basis for a Pedal the Cause grant, and then one from the U.S. Food and Drug Administration. These grants have allowed us to open a clinical trial to study a promising new treatment for SDH-deficient GIST.”

The synergistic partnership between Dr. Sicklick and Debra generated a perfect storm of awareness, funding, and research that suddenly put GIST on the radar of many people who Dr. Sicklick believes five years ago, would not have otherwise known about this disease. “SDH-deficient GIST was suddenly being recognized by groups like The Biden Cancer Initiative, and getting a lot of recognition as a disease that needed to be solved,” Dr. Sicklick explains.

“I think the reason we’ve been so successful is because it’s always been about a team approach. Debby and I are partners and friends…  we broke down a lot of the usual boundaries between patients, families, and physicians in order to start working together to put an end to this disease.” -Dr. Jason Sicklick, 2018 RARE Champion of Hope in Medical Care and Treatment

On GIST Awareness Day, Monday, July 13, Debra will be remembering her son Merak, who passed away in February 2020, by connecting with other GIST families and patient advocacy organizations. While COVID-19 bars any in-person gatherings or celebrations, Debra and Dr. Sicklick encourage everyone to participate in GIST Awareness Webinars presented by The Life Raft Group.

“We continue to press onward every single day, with great respect and professional admiration for one another, always united in our mutual goal inspired by the memory of Merak to fund and find a cure for SDH-deficient GIST.”  

Join them in supporting the UC San Diego GIST Research Fund to treat this rare, but deadly cancer.