After finding out I have confirmed metastatic melanoma in my liver – a night full of support, love and HOPE was more than a girl could ask for and just what was needed to get through the coming days, weeks, and months of so many unknowns.
On September 23,, 2021 Paul and I joined the Melanoma Research Foundation (MRF), our family, closest friends and many patients, advocates and melanoma survivors at the 10th annual MRF Denver Gala and 10th annual of the CUREOM initiative.
Paul and I were looking forward to this night as co-chairs and have decided to dedicate our time, energy, and passion to advocating, sharing our story, and raising the much-needed research funds of all Melanomas since my diagnosis over 4 years ago.
Paul and I were so honored to speak on behalf of CURE OM and share how this initiative has greatly impacted our life for the better.
As many of you know through my story, ocular melanoma is one of the rare subtypes of melanoma, it occurs in the eye. Although it is similar in name, it functions quite different than cutaneous melanoma and there are currently no FDA approved treatments. The CURE OM initiative was created to increase awareness, educate patients and their loved ones, and fund research in ocular melanoma, which we will call OM.
The CURE OM initiative was patient founded by Gregg Stacks along with his wife Dr. Sara Selig. Ten years ago, at the first MRF Denver gala, the MRF honored Gregg Stacks with a posthumous courage award, sadly Gregg did not survive to see the first OM research grant be awarded but he had laid the foundation for this to happen. This was a first step in providing funding for a rare cancer that impacts roughly 2000 Americans each year.
To date, CURE OM has funded over $2.1 million in research grants to improve outcomes for people affected by this disease. Through CURE OM, they have developed accessible and up-to-date educational materials, an online discussion board specifically for OM patients and family members to connect globally. In addition to funding research, they have organized more than 15 global science meetings, advocated to have OM included in the National Cancer Institute’s Cancer Genome Atlas Project, hosted ten patient and caregiver meetings, started global support groups, and so much more.
In May 2021 CureOM launched VISION – a first of its kind OM patient registry —which was built step by step from the ground up together with patients, caregivers, clinicians, and researchers from around the world. Through the VISION Registry, researchers will be able to identify important patterns in OM to advance us toward better treatments and ultimately a cure.
Thanks to the hard work and dedication of the many patients, caregivers, doctors, nurses, researchers and staff, the OM community has made remarkable progress over the past decade and the future is full of HOPE and promise.
Living with OM is scary but I continue to focus on the HOPE. We are hoping to have the first approved FDA treatment for OM by the end of the year and I remind myself daily that ten years ago in cutaneous melanoma there was only 1 approved treatment, now there is 16. It is essential at events like this, we continue to support the funding of additional research for more treatment options to provide more HOPE to more individuals like myself.
Big thank you (actually…..thank you will never be enough, but thank you!) to all those that supported with us in person and from afar virtually. Your donations, your presence, your emails, phone calls, text, etc mean more than you’ll ever know!
Thank you for being a part of making a difference in the melanoma community. The future is FULL OF HOPE!
https://melanoma.org/ – Although the galas are over for the season – Research never stops and funding is always needed. #getnaked #eyegetdilated #curemelanoma #cureom