News & Press
Summer’s Story: The Need for an OM Patient Registry
Summer shares her ocular melanoma story and why she joined the #CUREOM Unite! campaign to support the development of a national ocular melanoma patient registry.
Dear OM Community,
Week after week, month after month, the reported cases of ocular melanoma in Huntersville, North Carolina continue to grow. We are not just statistics, we are mothers, fathers, brothers, sisters, sons, daughters, neighbors, friends and loved ones. We have been affected by ocular melanoma and we have come together to work as a team to help educate, raise funds and create awareness. We are here to let others know that we choose to stand against these statistics and make a difference in the lives of those around us.
Initially, three young women who attended the same high school in Huntersville learned of each other’s ocular melanoma diagnoses by sheer chance—I was one of these young women. Through social media, word of mouth and exhaustive Google searches, we began to connect the puzzle pieces of what is now believed to be the largest ocular melanoma cluster ever reported. The investigation has revealed multiple cases. All of the members of the cluster have now found each other and have formed new friendships.
The local and state government as well as the National CDC, are unable to track the disease or account for those affected. It takes years to accumulate the data and statistics which leave us in a “no man’s land” of information. Without the ability to track ocular melanoma, find some similarities in our cases, and eventually the cause of ocular melanoma, it will continue to wreak havoc in our community and take the lives of those we love.
If there had been an ocular melanoma cancer registry, doctors could have seen that there was an unusually high number of ocular melanoma cases reported in Huntersville. Now we have come together to help develop awareness and raise funds for a tracking system that will help develop better treatment options and find a cure.
If you would like to help us, please join the CURE OM team and walk in the Miles for Melanoma 5K walk/run on Sunday, August 28, 2016 in Raleigh, NC to learn more, click here
To learn more about the ocular melanoma (OM) patient registry and the #CUREOM Unite! Campaign, click here