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Chairman of OMSLife
“If you change nothing, Nothing will change...."
Rare diseases such as OMS are easy to be misunderstood, misdiagnosed, and improperly treated. OMS awareness thrives primarily in small circles of supporters, while OMS research gets limited funding due to the small numbers of patients impacted. Most doctors and medical staff have never heard of OMS much less ever seen a case. This leaves OMS warriors and their families left to fend for themselves in dealing with medical staff, insurance companies, schools, and the general public. In fall 2009, after OMS struck our family, we were desparate for answers. We saw opportunities to help families collaborate in the struggles of OMS, to raise research funding, and to raise general awareness. So we decided that things had to change. And that is why we established The OMSLife Foundation.....
We want to be advocates of change in the battle against Opsoclonus Myoclonus Syndrome. While Opsoclonus Myoclonus Syndrome is known in medical circles as OMS, it is known in family support forums as Lauren’s battle, Jovani’s struggle, or that disease with the long name that afflicts Alexa. The disease does not discriminate and attacks children around the world as it becomes a personal battle for each child and their family. The OMS family community is so small that the families know each other on a first name basis. We share highlights of OMS warriors such as Valen, Carter, Joey, Lucy, Josephine, Camila, Cole, Audrey, Victoria, and Salvador. And we mourn their struggles. These OMS warriors are primarily toddlers under 5 years old whose parents just want their child to have a normal childhood.
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 foundation directs all proceeds towards these goals. We are changing the fight against OMS and I 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.
“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.”