cureMEC at ASCO
By: Michael Casaus / co-Founder cureMEC
As I entered McCormick Place, the massive conference center in Chicago that was host to the American Society of Clinical Oncology (ASCO) annual meeting, I quickly became overwhelmed by the enormity of the place and the tens of thousands of attendees swarming around. After checking in and receiving my name tag, I also became overwhelmed by the reason I was there: as a “Patient Advocate” for my son Sebas. I put on my lanyard, stepped into a corner, and wept.
It was a difficult decision to come to ASCO. It’s an expensive conference in an expensive city. I would have to take time off work and be away from Sebas and the family for five days. And with the boys home for summer vacation, Naomi would have to hold down the fort at home, while juggling her own work. But we knew that this conference had the potential to open new doors for cureMEC and advance our quest for a cure. So we decided I should go and we are so glad I did!
The 5-day conference was filled with keynotes, panel discussions and poster presentations on the latest cutting-edge cancer research. Each morning, I would sift through the 200-page agenda and make a plan for the day. I heard talks on the significant role that AI is playing in cancer research, spoke directly with scientists doing innovative research, and learned more about antibody drug conjugates (ADCs), a new class of cancer treatment that everyone at ASCO was talking about.
One of our top goals for ASCO was to meet certain people in-person that we have been communicating with via Zoom over the past two years. We know how important it is to meet people in-person, to talk face to face and to build relationships. I was very excited to meet with some of the top patient advocates in the country, including Corrie Painter, Jim Palma and John Hopper, who took me under their wing and were so generous with their time. A highlight was meeting Barbara Van Hale from Pattern.org, who has been an angel and an inspiration to our family since we met her two months ago. She has been giving us invaluable advice and is helping us spark interest in MEC from cancer researchers. One of those researchers is Dr. Brian Van Tine, a leading sarcoma expert and oncologist at Washington University in St. Louis, who is developing a novel approach to finding a treatment for MEC. More on that to come!
In addition to wanting to connect with researchers and other patient advocates, we also wanted to connect with some of the pharmaceutical companies who are developing drugs that may help Sebas. Every year at ASCO, pharmaceutical companies from around the world fill the massive Exhibit Hall with their multi-million dollar booths to promote their latest cancer drugs and showcase the pipeline of new drugs they have in development. I was able to tell Sebas’ story to representatives of several companies, including Daiichi Sankyo and Boehringer Ingelheim, who are developing exciting new drugs to treat certain adult cancers. Sebas has two proteins that were found to be overexpressed in his tumors and these drugs work to inhibit those proteins. We don’t know what role these proteins play in Sebas’ cancer but as we look to all possible treatment options if his cancer progresses, one of these drugs may one day help Sebas.
After four days at ASCO, I left both exhausted and reinvigorated. The weight and responsibility of it all was heavy and each day brought a new round of emotions. Of the 40k attendees, I think I was the only patient advocate whose child was actively fighting cancer. But cureMEC was able to establish itself as a valuable patient advocacy organization and I feel confident that at least one of the relationships I built will help save Sebas’ life. When the movie is made about our successful quest for a cure for MEC, ASCO 2024 will prove to be a pivotal chapter.
