Due to COVID-19, we are unable to have our UBA5 Awareness Walk at the Topeka Zoo. Last year, our walk was our biggest fundraising event, raising $5,000 for the UBA5 Foundation. This year we are going to do our walk a little different. We will go virtual. Now you can participate from anywhere! Each week we will take the top 5 participants who walk/run/roll the most miles and place them in a drawing for a $25 gift card. At the end of the month, we will place the top 5 participants in a drawing for a $250 gift card. All shirts can be order via a link
https://www.customink.com/fundraising/uba5-virtual-awareness-walk-shirt, you can pay for and have shirts shipped directly to you. Get registered and get MOVING!
We cordially invite you to participate in the 2nd annual UBA5 Awareness Walk. This event will raise money for the UBA5 Foundaiton. 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 whom after years of testing discovered their children suffered from this rare genetic mutation. Currently, there are only around 30 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 treatmet for any one patient. This is why raising funds for research is vital. More research means treatment plans and possibly a CURE for those suffering. The symptoms of UBA5 limit the person affected's ability to walk, talk or run. We are going to MOVE for them by raising awareness and funds.
Money raised during this event will go toward our research goal of $50,000 to start a research program for UBA5 gene mutation. We are at $13,000 and need your help to get the other $37,000. If you have any questions about the walk or UBA5 please email
uba5gene@gmail.com
