Welcome to STELLA STRONG - a website that provides updates on all things Stella and rare disease cure advancements. Our mission is to raise awareness and funding for CDKL5 and orphan disease research, so that we can find treatments — and ultimately, a cure — for Stella and others like her live the lives they deserve.
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Currently Stella — and most other CDKL5 kids — suffer from daily seizures.
Since April 13, 2020, Stella has experienced over 500 seizures. We are working tirelessly to get Stella as many "zero seizure" weeks as possible.
All of Stella’s doctors and therapists agree that if we could give her a break from these seizures, it would help her overall development and progress toward being independent.
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Team Stella Strong.
Sign up here to keep informed on how Stella is doing and our progress toward finding rare disease cure advancements.