MRF Blog

Guest Post: Finding Knowledge and Feeling Loved at the CURE OM Patient Symposium

June 26, 2018 | Categories: Causes, Events, Ocular Melanoma, Patient Stories

I first heard about the CURE OM Symposium via Facebook and wanted to attend. However, in the past the timing just didn’t gel with my work schedule. To my delight, this year’s meeting fell at a time that I was able to take off of work to attend. 

You might ask, “Why would you go to such an event?” Well, whenever you become faced with a rare, incurable disease like ocular melanoma, it brings with it a thirst for knowledge. These symposiums provide just that, real time knowledge. This knowledge gives you the fortitude to be your best advocate on this journey.

Any event that hosts doctors that are willing to give their time and efforts to a cause so rare, is one where I need to be. If I can swing the time off, I am there. I continue to be uplifted by the passion these doctors have in sharing their time and efforts to champion the cause of finding a cure for OM. What an amazing opportunity it is to listen to their efforts and ideas, ask questions and visit one on one with them.

This is where I first heard that I am an “OMIE HOMIE,” meaning that I was in the midst of others who “get” what each of us is going through. I was touched to meet family members who have lost loved ones to this disease and still come to support those who are still fighting. The inspiration one gains from just being in the same room and hearing each other’s stories is so powerful. You gain and give strength from and to each other. It is truly a totally awesome experience being among your peeps! (Ha. Ha. Get it?)

Of the many educational sessions I attended, I gleaned at least one new fact from each. One of the most important things that was reinforced for me was that “Surveillance is important for survival.” Almost every doctor mentioned this in some way. Another was learning that there is The Cancer Genome Atlas (TCGA), funded by the National Institutes of Health (NIH), which is a comprehensive and integrated analysis of key genomic/molecular features of many cancers. And wait for it, uveal melanoma was chosen as one of the 10 rare cancers to be included. It’s so encouraging to hear the impact that genetics is having on the progress of finding a cure for cancer, especially our cancer, and our best hope is for doctors to be collaborative.

I have been to several other symposiums and each time I have left with at least one new fact and several new friends. The highlight of it all was feeling the love. Knowledge is great, but love is greater!

I took away several things from this symposium. I left knowing there are other folks out there who get what I am going through. I learned what each of us can do to help raise funds for OM research. Like give up one Starbucks coffee a week. I was among some of the doctors out there who are working diligently trying to figure out what causes metastasis and how to stop it. I was versed that there are non-profit organizations funding research to get a handle on this disease. Bottom line, I left with a positive, loving attitude knowing that I am not alone or helpless.

Guest post written by Stormy Thornton, an ocular melanoma patient and CURE OM advocate who was a first-time attendee at the 2018 Eyes on a Cure: Patient and Caregiver Symposium. CURE OM events, resources and funded research are made possible by supporters like you - please consider a tax-deductible gift today! 

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