Hope4Harper- #Reynascure

Hope4Harper- #Reynascure

Owner: vanitajogani

Non-Profit members: 1

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EIN # 45-4886455 Reyna Jogani is an 18 month old suffering from CDKL5 deficiency disorder. While some other genetic conditions express themselves in later stages of life, CDKL5 caused Reyna to have seizures as early as 3 weeks of age. Our daughter has never made eye contact with us, but her eye structure is fine. CDKL5 leads to cortical visual impairment. Reyna cannot sit, crawl, walk. CDKL5 leads to developmental delays and severe neuro-development impairment. 

There are 1200 such reported children in the USA alone, and around 4000 worldwide. There is no treatment or cure today. We are working with Dr. Bhami Shenoy, Mangalore, India to develop enzyme replacement therapy to help Reyna and other children. Phase 1 of this clinical trial will cost around $300,000 out of which, we’ve raised $40,000 so far. With your generosity, we can help Reyna and the others.Please donate!

Hope4Harper is acting as our fiscal sponsor for this project so that all donors can receive tax exemption (EIN # 45-4886455).

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Participating events

Hope4Harper- #Reynascure at Sevathon-2019

Non-Profit : Hope4Harper- #Reynascure
Tax Id : EIN # 45-4886455

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