Uba5 Foundation
This page is to help raise awareness and connect with others that have been diagnosed UBA5 gene mutation. This page represents the UBA5 Foundation. The UBA5 Foundation was created by two Kansas mothers who's children are affected with UBA5. Our mission is to raise funds to support on-going research for UBA5. We believe research will lead to therapeutics to treat symptoms of UBA5 creating a better quality of life for those affected. We also firmly believe a CURE is possible with research. Currently, there are only around 30-40 people affected worldwide and growing. Individuals with this genetic mutation suffer from intractable 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.
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Home | Uba5 Foundation Home What is UBA5. Research UBA5 Warrior Stories Fundraising More REGISTER NOW FOR THE 6TH ANNUAL UBA5 WALK August 24 2024 ABOUT UBA5 FOUNDATION Making Change Possible 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 3040 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.
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Category Birth Defects, Genetic Diseases
Další Birth Defects, Genetic DiseasesDiscussions
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1. What innovative fundraising ideas have other rare disease foundations implemented that could be adapted for the UBA5 Foundation to raise awareness and funds for research?
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Brooklyn Simmons
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2. How can we better connect families affected by the UBA5 gene mutation to ensure they receive the emotional and practical support they need?
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Brooklyn Simmons
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Thank you for shining a light on such an important issue! Together, we can make a difference and support families affected by UBA5. 💙 #UBAStrong
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Excited for the upcoming UBA5 Walk! It's a great opportunity to raise awareness and funds for research. Let’s all come together for those who need us most! 🦸♀️ #CureForUBA5
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