Chairman of OMSLife
Rare diseases such as OMS are easily 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 desperate 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.”
The OMSLife Foundation is a non-profit organization whose goal is to help caregivers and researchers in the battle against OMS. Founded in 2012, OMSLife was established after OMS warrior Alexa was diagnosed with OMS and the family found information was lacking and inconsistent. Friends and family have helped build OMSLife into a primary resource of OMS information with a web site, wiki, Facebook groups, You Tube and Twitter.
OMSLife helps caregivers connect with other caregivers in order to find answers to their issues while also developing support networks. OMSLife also helps connect caregivers with OMS specialists and clinicians. This is especially important for caregivers outside of the United States.
Our mission is to spread awareness of Opsoclonus Myoclonus Syndrome, maintain a support network for caregivers, and fund research for a cure.
Yes. The IRS designated The OMSLife Foundation a non-profit organization in 2012 with donations tax deductible.
What percentage of my donation goes to the objectives of your mission statement and what percentage goes to overhead?
We make every effort ensure that donations given to The OMSLife Foundation go to research, awareness campaigns, and
maintaining the support network for the OMS caregivers. Since our inception in 2012, our administrative costs such as
web site domain, printing, postage, office supplies, and even fees for Paypal and credit card donations have been
underwritten by an anonymous donor. This means that donations received from you and other generous donors go to
provide many needed services including:
- Hosting our annual caregiver conference
- Co-hosting the International OMS Medical Workshop
- Development of the NORD OMS Patient Reported Registry
- Grants for research