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- EIN 84-3406755
- info@smc1a-epilepsy.org
- 255 King St San Francisco CA 94107 USA
- smc1a-epilepsy.org
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- smc1a_epilepsy
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Nonprofit Overview
Mission: Nonprofit Organization with a goal to accelerate SMC1A research and find a cure for SMC1A related epilepsy and developmental impairment. We are raising money to develop treatments for SMC1A Epilepsy. We are a group of parents of girls with mutations in the SMC1A gene. We are so unique that we do not have a specific name for us but are often referred to as SMC1A DEE, DEE85, or SMC1A Epilepsy and a few other names. The most severe symptom for our kids is intractable epilepsy. The seizures they experience are generalized tonic-clonic seizures and they come in clusters, meaning they have a great number of seizures in a row together, and often these clusters last for days without responding to rescue meds. Many times our kids experience prolonged seizures - status epilepticus. This is extremely hard and difficult on their little bodies as they do not stop seizing for hours, again despite all available medical interventions and drugs, there is nothing that helps them stop seizing. It is a life long chronic condition with no treatments or cure. We want to change this and FUND RESEARCH with the focus on developing effective treatments. Read more at smc1a-epilepsy.org
Target demographics: fund research that focuses on finding effective treatments for SMC1A related developmental and epilepsy disorder.
Geographic areas served: Rare Disease Research
Programs: funding research for rare disease and developmental impairment