2024 UBA5 Awareness Walk

Name: 2024 UBA5 Awareness Walk
Start: 2024-08-24T08:00:00-05:00
End: 2024-08-24T11:00:00-05:00
Location: Topeka (Kansas)

Schedule

Sat Aug 24 2024 at 08:00 am to 11:00 am

UTC-05:00

Location

Topeka (Kansas) | Topeka, KS

We cordially invite you to participate in the 6th 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. …