Making Change Possible.

The UBA5 Foundation was established by two families from eastern Kansas who, after years of investigation, discovered that their children were affected by a rare genetic mutation, UBA5. Currently, there are only about 30 to 40 known cases globally, and that number is increasing. Individuals with this genetic mutation experience a range of challenges, including intractable epilepsy, dystonia, developmental delays, microcephaly, hypotonia, spasticity, failure to thrive, and vision impairments. UBA5 also leads to progressive brain deterioration, atrophy, and necrosis. At present, little is understood about this mutation, and there is no standardized treatment for affected individuals. This is why fundraising for research is essential. Increased research efforts could lead to the development of treatment plans and, potentially, a cure for those impacted. The UBA5 Foundation is committed to supporting groundbreaking research and raising awareness about this rare condition. By fostering collaboration among scientists, medical professionals, and affected families, the foundation aims to accelerate the discovery of effective therapies and improve the quality of life for those living with this genetic mutation. 

Moreover, the UBA5 Foundation works tirelessly to connect families with resources, offering a network of support and hope to those facing the challenges of this condition. Through determination and a shared vision, the UBA5 Foundation strives to make a lasting impact, ensuring that no family feels alone in their journey and that every child affected by the UBA5 mutation has the opportunity for a brighter future. Together, we can make change possible and bring hope to countless lives around the world.