Uba5 Awareness Walk

We cordially invite you to participate in the 8th annual UBA5 Awareness Walk. This event will raise money for the UBA5 Foundation. The Foundation will invest your money in medical research for treatment options and provide financial support to families with children affected by this disease. The UBA5 Foundation was founded by two eastern Kansas families who after years of testing discovered their children suffered from this rare genetic mutation. Currently, there are only around 30-40 people affected worldwide, and growing. Individuals with this genetic mutation suffer from irretractable epilepsy, dystonia, developmental delays, microcephaly, hypotonia, spasticity, failure to thrive, and vision defects. UBA5 also causes progressive brain deterioration, atrophy and necrosis. Little is currently known about this mutation and there is no standard treatment for any one patient. This is why raising funds for continuing research is vital. More research means treatment plans and possibly a CURE for those suffering. The symptoms of UBA5 also limit the ability to walk, talk or run. We are going to MOVE for them by raising awareness and funds.

We hit our $50,000 goal and are in the process of investing it in research initiatives. We are starting over with a new $50,000 goal!  Help us reach our goal and MOVE for those affected by UBA5.