Anchor at News 5 Cleveland
An Oscar-nominated actor recently spoke exclusively to PEOPLE about his adult son with a rare disease. It was the first time Colin Farrell had spoken publicly about his son.It inspired a Rocky River family to share their story, as well, in hopes of continuing to build on the awareness and support they say is important to creating a more accessible and inclusive world for children like their daughter and many more.“I do feel like she’s like an angel on earth,” said Beth Synk.
She says right now, a cure looks different for every family; be it gaining communication skills, eliminating seizures, or independent living.“I think it’s really exciting that for a rare disease there is a lot of hope,” said Foglyana. “We have 20 therapeutics in the drug development pipeline. Two of those have finished with their phase one and two trials, and hopefully headed to phase three soon, and we can’t wait for the day when there’s an FDA-approved treatment for all of our families.
Colin Farrell Cuyahoga FAST Foundation For Angleman Syndrome Therapeutics News5cleveland Northeast Ohio News PEOPLE Magazine Rocky River Community
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