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Welcome to The OMSLife Foundation
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Support Jason and Amy as they "Run Over OMS" - http://www.razoo.com/story/Jason-And-Amy-Hancock-Are-Running-Over-Oms |
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Who We Are In 2009, the harsh reality of Opsoclonus Myoclonus Syndrome (OMS) hit a family in Lubbock Texas. OMS is a rare childhood disease where the immune system tries to battle a neuroblastoma (cancer) and instead attacks the brain. Left untreated, OMS will cause a life of agony for the child. Our organization was founded on the principles of raising awareness of OMS and helping those researchers looking for a cure. |
A Letter from the Chairman “These OMS warriors did not choose OMS - it chose them. But we have chosen to make a difference in battling OMS and in efforts to find a cure. Please join us in this cause.”
This rare disease defines itself by its’ name. While it is known in medical circles as OMS, it is known in family support forums as Lauren’s battle, Joey’s struggle, or that disease with the long name that afflicts Alexa. The disease does not discriminate and afflicts children around the world as it becomes a personal battle for each child and their family. The OMS family community is so small that they often know each other and the OMS warriors; names like Morgan, Max, Carter, Joey, Lucy, Josephine, Camila, Victoria, Salvador, and Reid. These children are primarily toddlers under 5 years old whose parents just want their child to have a normal childhood.
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Our Mission Unlike the well known diseases that afflict thousands of people, OMS has difficulty getting attention in the research circles and research funding is extremely limited. We encourage you to give generously to The OMSLife Foundation so that we can ensure research is done on this terrible disease.
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Often, rare diseases are easy to be misunderstood, misdiagnosed, and improperly treated, research improperly funded due to the small numbers of patients impacted, and the patients left to fend for themselves in dealing with medical staff, insurance companies, schools, and the general public. Such is the case for OMS families.
The OMSLife Foundation’s goals are to raise awareness of the general public and the medical community, raise funds for OMS research, and assist families in their battle of OMS. The fund directs all proceeds towards these goals. We continue to be encouraged by the OMS research being done as we seek a cure. Thank you to all of the OMS researchers, specialists, and care givers who are making a difference for these OMS warriors.