From the Chairman of The OMSLife Foundation
Rare diseases like Opsoclonus Myoclonus Syndrome (OMS) are often misunderstood, misdiagnosed, and inadequately treated. Awareness of OMS remains largely confined to small circles of dedicated supporters, while research receives limited funding due to the relatively small number of patients affected. Most physicians and medical professionals have never encountered a case of OMS, leaving affected children—our OMS warriors—and their families to navigate complex challenges alone, from educating healthcare providers and advocating with insurance companies to raising understanding in schools and the broader community.
In the fall of 2009, OMS entered our family’s life, and we found ourselves desperate for answers and support. In that moment, we recognized clear opportunities to bring families together, to advance critical research through fundraising, and to elevate public awareness. Determined to drive meaningful change, we founded The OMSLife Foundation.
Our mission is to serve as steadfast advocates in the fight against Opsoclonus Myoclonus Syndrome. In medical literature, it is known as OMS; in family support groups, it is Lauren’s battle, Jovani’s struggle, or the long-named disease that has forever changed Alexa’s life. These children are primarily toddlers and young preschoolers whose parents simply want them to experience a normal, joyful childhood. This devastating condition does not discriminate—it affects children worldwide, turning each diagnosis into a deeply personal journey for the child and their loved ones. The OMS community is close-knit and often patients and caregivers know one another by first name. We celebrate the triumphs of many OMAS warriors while sharing the pain of others who continue with ongoing challenges.
The OMSLife Foundation is committed to three core goals: raising awareness among the general public and medical community, securing funding for vital OMS research, and providing resources to families facing this diagnosis. Every dollar we raise is directed entirely toward these objectives.
We are making tangible progress in the fight against OMS, and I remain deeply encouraged by the groundbreaking research underway as we pursue a cure. On behalf of every OMS warrior and their family, I extend profound gratitude to the researchers, specialists, and caregivers who dedicate their expertise and compassion to improving outcomes for these remarkable children.
Together, we will continue to change the trajectory of this disease—until every child can live free from its shadow.
Sincerely,
Mike Michaelis – President,
The OMSLife Foundation
P.O.BOX 2899
Cypress, Texas 77410
www.omslifefoundation.org