Growing up, I always enjoyed puzzles, despite my short attention span, growing frustrated as I tried to put them together. As I sit here and write this, the irony sets in as I now view my life as one giant puzzle and slowly but surely, a complete picture is beginning to take shape.
I have my health, happiness and career pretty well set. There’s a couple of other parts that are still coming together, but I know that’ll be only a matter of time.
As I’ve alluded to a few times, following my surgery in 2015, I was contacted by a resident at Yale who was undertaking a research project to better understand the underlying genetic alterations that cause neurocytoma. The research lab obtained a portion of my tumor and I agreed to donate a blood sample to allow them to analyze my DNA to look for any genetic markers.
For everyone involved, we all wanted answers on this particular tumor and to immerse ourselves in knowledge about its origins, genetic markers and hopefully, how to treat it at an early stage.
A neurocytoma is a very, very rare tumor, as evidenced by the literature, or the lack thereof of this tumor type. As such, finding an abundance of these tumors in Connecticut, or across the country, was difficult.
At the outset of the origination of The Cusano Family Brain Tumor Fund, funds were used as seed funding to help propel research efforts forward to an effective treatment of any type of brain tumor. This past fall, when my family and I made our annual visit to Yale to present the net proceeds for 2017, a proposal was made to us that a portion of the funding be used to complete the study on neurocytoma, which my family and I emphatically agreed to. Through the use of the funds raised through Brainstormin‘, additional samples would be obtained from around the world to allow researchers to continue to test their hypothesis.
Fast forward to June 18, 2018. With my family, friends and sponsors at my side, we spent the day at Yale to hear the results of Phase One of this project and tour the research lab of Dr. Murat Gunel. The day was surreal, as it was such a satisfying moment for all of us to realize the impact our dollars have made and the lives we hope to affect in the future. It is our collective hope that no other family has to endure what we did and I am beyond thankful to our donors for their support, as well as the doctors and researchers at Yale for their dedication and efforts on this project. “For your kindness, I’m in debt to you and I never could have come this far without you.”
I invite you to enjoy some photos and the abstract of the study prepared by the Gunel Lab, which you can hear more about on September 14th!
With gracious support from the Cusano Family Brain Tumor Fund, the Gunel Lab at Yale University, has begun to comprehensively characterize the genomic features of Neurocytoma, a rare type of brain tumor, that has long been poorly understood. In addition to the Yale School of Medicine, a large cohort of tumor samples has been collected from other international collaborators, including the University of Bonn Medical School (Germany), University Hospital of Cologne (Germany), Acibadem University School of Medicine (Turkey), Bahcesehir University (Turkey), Pittsburgh University Medical Center, University of California, and the Canada Brain Tumor Repository. Using unbiased molecular approaches, the Gunel Lab aims to understand the underlying genomic events driving tumorigenesis (formation) in these tumors. Ultimately, the hope is that these findings will lead to the development of targeted, personalized treatment for Neurocytoma, leading to improved survival and quality of life for these patients.
To this end, the Gunel Lab has used complementary genomic experiments and bioinformatics approaches on a subset of collected samples. With completion of the first round of experiments, they have successfully identified preliminary clues about the molecular processes driving and causing formation of these tumors. A second phase of experiments to further understand these mechanisms is planned, with the hope of sharing their findings with the scientific community to facilitate the development of targeted treatments for this disease. The Gunel Lab is grateful for the generous support from the Cusano Family Brain Tumor Fund, and their supporters, to continue and complete this important work for patients with Neurocytoma.
With your help, we are on the precipice of something great and I am beyond grateful and humbled by every single donor and company that has supported us year after year. Let’s help the staff at Yale get to the bottom of this by advancing brain tumor research in an effort to ultimately find the cure.