Hello, my name is Maren. My daughter Stephanie was diagnosed with small cell carcinoma of the ovary hypercalcemic type in 2009. Very little was known about this disease at that time. Her entire treatment was based on one worldwide study from several years before. This study only had about 20 patients, but it was all her doctors had to go on. We were told not to look on the internet because anything we found about ovarian cancer would not be about SCCOHT. Stephanie was very frustrated with this lack of information and would say that when she got better, she would find someone to research this disease. Sadly, she did not get better. Following her passing in 2010, we started the small cell ovarian cancer foundation in loving memory of our daughter in order to do this work for her. The following year we discovered that three separate studies had begun. We donated Stephanie’s tumor tissue and regular tissue to all three of these studies. In the U.S., hospitals had a safe tissue for 10 years, so we were able to arrange for these contributions.
Exciting news came out in 2014 that all three studies had simultaneously identified the genetic mutation that causes this disease. This was huge. They have made great strides in research, but there is still much to do. And to do this, they need tissue and blood samples. We have joined the SCCOHT International Patient Registry on behalf of Stephanie. There are people to help you through the process if you would like to participate on behalf of your deceased daughter. It is vital that the SCCOHT-SMARCA4 Registry and Biobank collect as much information as possible. This will support research whose goal is to improve outcomes for patients. Thank you.
