Hope4Harper- #Reynascure

Hope4Harper- #Reynascure

Owner: vanitajogani

Non-Profit members: 2

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Reyna Jogani was born with a random genetic condition called CDKL5. CDKL5 is a gene that is responsible for many functions, like neuron production in the brain. Lack of this gene causes many complications including reduced life expectancy. Reyna has had seizures since she was 3 weeks old, they are not controlled. She cannot sit, walk or crawl. She has vision difficulties. There is no cure or treatment for this condition. We are raising funds for a clinical trial for enzyme replacement therapy with a team of doctors at Stanford, Boston & Mangalore. We need to find a cure in a timely manner for her, and the 1200 children in USA, and 8000 children worldwide and many more undiagnosed affected by this condition. To donate, please go to reyna's cure (one word) on Facebook or here: https://www.facebook.com/donate/430721924375132/

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Participating events

Hope4Harper- #Reynascure at Sevathon-2019

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