OMSLIFE FOUNDATION INC

OMSLIFE FOUNDATION INC is a U.S.-based nonprofit organization dedicated to supporting individuals and families affected by Opsoclonus Myoclonus Syndrome (OMS), a rare and orphan autoimmune disease.

Mission

The foundation's mission is to raise awareness of OMS, maintain a support network for caregivers, and fund research towards finding a cure for the disease[1][2].

Goals and Activities

The organization focuses on several key areas:

• Awareness and Education: Providing information for both medical professionals and patients to facilitate better decision-making for OMS treatment.
• Support Network: Creating a supportive community through social media and resources to assist patients and caregivers[2].
• Research Funding: Encouraging collaboration with researchers to advance understanding and treatment of OMS[2].

About Opsoclonus Myoclonus Syndrome

Opsoclonus Myoclonus Syndrome is a rare condition primarily affecting children between the ages of 1 and 5. It is characterized by symptoms such as loss of balance, myoclonus (involuntary muscle jerks), opsoclonus (chaotic eye movements), tremors, and sleep disturbances. In many cases, OMS is linked to an underlying cancer, notably neuroblastoma[3].

Charity Profile

OMSLIFE FOUNDATION INC is headquartered in Cypress, Texas, and has been rated by Charity Navigator with a 3/4 star rating[4]. The organization is also listed on GuideStar, where it is recognized for its efforts in research and awareness for rare diseases[5].