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Fundraiser for CDKL5 Enzyme Replacement Therapy
0% complete
$1,500 raised of $260K
29 donations
Reyna Jogani is an 18month old suffering from CDKL5 deficiency disorder. While some other genetic conditions express themselves in later stages in life, CDKL5 caused Reyna to have seizures as early as 3 weeks of age. She has never made eye contact although her eye structure is fine. CDKL5 leads to cortical visual impairment. Reyna cannot sir, crawl or walk. CDKL5 leads to developmental delays and severe neuro-development impairment.
There are 1200 reported cases in the USA itself and 4000 al around the world. There is no treatment or cure today. The parents are working with Dr. Bhami Shenoy, Manglore, India to develop Enzyme Replacement Therapy to help Reyna and other children. Phase 1 of this clinical trial will cost around $300k out of which they have raised $40k so far. With your generosity we can help Reyna and others. Please donate.
Facebook page for the fundraiser and awareness
There are 1200 reported cases in the USA itself and 4000 al around the world. There is no treatment or cure today. The parents are working with Dr. Bhami Shenoy, Manglore, India to develop Enzyme Replacement Therapy to help Reyna and other children. Phase 1 of this clinical trial will cost around $300k out of which they have raised $40k so far. With your generosity we can help Reyna and others. Please donate.
Facebook page for the fundraiser and awareness
Organizer and beneficiary
Jainu Jogani
Beneficiary
