READ ARTICLE: The democratization of science could speed up healthcare research

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“A direct connection between scientists and the community helps ensure the science is being as efficient as possible and addressing the direct needs of the patient community.”

This piece features our Science Director, Dr. Kit Donohue (quoted above)! It explores recent challenges in rare disease research, and how decentralized, autonomous organizations (DAOs) like Vibe Bio creates can help in our journey to finding Lafora disease treatments.


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Alexis’ Story in Local News

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AC Cruz has been sharing her daughter Alexis Rodriguez’s story with local news outlets to raise awareness and funds while she faces Lafora disease. Read the news articles here:

Long Island teen battles rare disease that affects less than 100 people globally

News 12, Long Island
December 19, 2022

“A Freeport High School alumnus is suffering from a rare and terminal disease that only affects 80 people worldwide.” [Read more…]

Freeport Mom Opens Up About Daughter’s Rare, Terminal Illness

Jeremy Barmash, Patch
Freeport, NY
January 5, 2023

“A once vibrant girl from Freeport is battling a rare and fatal form of epilepsy.” [Read more…]

Freeport girl fighting rare, fatal epilepsy

Mohamed Farghaly,
Long Island Herald, NY
January 12, 2023

“Alexis Rodriguez, a 19-year-old from Freeport, is facing a difficult and uncertain future as she battles a rare and fatal form of epilepsy.” [Read more…]

Patch Article News 12 Video Alexis’ Story Long Island Herald Piece

Read article: ‘The importance can’t be understated:’ Home Care Nurse shortage impacts local residents

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“If nurses weren’t here, then she – I can say with pretty much absolute certainty – would not be here either,” Michele said.

Nurse care for a Lafora disease patient is so important, though not always accessible.

If your child needs 24/7 care, then having two people at home is a necessity. Michelle Ambroe was featured by her local news discussing the care her daughter, Jessica, needs because of Lafora disease.


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