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DTSTART;TZID=America/Chicago:20250503T090000
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DTSTAMP:20260404T080411
CREATED:20250306T202417Z
LAST-MODIFIED:20250306T202417Z
UID:10000003-1746262800-1746273600@epidermolysisbullosanews.com
SUMMARY:Grateful for Graham 5K
DESCRIPTION:The fourth annual Grateful for Graham 5K Run/Walk will take place on May 3rd. Graham Robertello is a 5 year old boy who was born with Epidermolysis Bullosa (EB). All proceeds raised will go directly to EBRP to help accelerate treatments and find a cure for EB! The event will be a 5K “out and back” run and walk. The event will also feature a Stroller Division because Graham loves going out on runs in the stroller with his mom. Whether you run\, walk\, or cheer\, your participation makes a real difference. Register now and help make this the biggest and best Grateful for Graham 5K yet!
URL:https://epidermolysisbullosanews.com/event/grateful-for-graham-5k/
LOCATION:Rayhill Memorial Trail\, Middle Settlement Rd\, New Hartford\, NY\, 13413\, United States
CATEGORIES:EB Research Partnership
ATTACH;FMTTYPE=image/jpeg:https://epidermolysisbullosanews.com/wp-content/uploads/2025/03/EBRP-Grateful-for-Graham-Event-Image-e1741286148475.jpg
ORGANIZER;CN="EB Research Partnership":MAILTO:allison@ebresearch.org
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DTSTART;VALUE=DATE:20250315
DTEND;VALUE=DATE:20250518
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UID:10000002-1741996800-1747526399@epidermolysisbullosanews.com
SUMMARY:Plunge for Elodie
DESCRIPTION:Named after 8-year-old Elodie Kubik\, who lives with a severe form of EB\, the Plunge began as a local effort in Wellesley\, Massachusetts\, organized by childhood friends of Elodie’s mom. They wanted to do more for the family than just offer emotional support\, and as they learned about EB and the larger rare disease community\, it became clear how desperately diseases like EB need funding to find treatments and cures. In short: every dollar truly matters. Thus\, the first Plunge for Elodie took place in 2018 and since has exploded into a global movement with 20+ sites around the world! \n            \n                \n                \n            \n			\n\n\nAdelaide\, Australia\nChicago\, IL\nDenver\, CO\nDoylestown\, PA\nGreensboro\, NC\nGreenwich\, CT\nLos Angeles\, CA\nMarco Island\, FL\nMelbourne\, Australia\nMornington\, Australia\nNashville\, TN\nNew York\, NY\nNiagara on the Lake\, Canada\nNorth Devon \,United Kingdom\nOkinawa\, Japan\nSan Jose\, Costa Rica\nPittsburgh\, PA\nSeattle\, WA\nSydney\, Australia\nWellesley\, MA\nVirtual Event
URL:https://epidermolysisbullosanews.com/event/plunge-for-elodie/
CATEGORIES:EB Research Partnership
ATTACH;FMTTYPE=image/jpeg:https://epidermolysisbullosanews.com/wp-content/uploads/2025/03/EBRP-Elodie-Plunge-Event-Image-e1741285667261.jpeg
ORGANIZER;CN="EB Research Partnership":MAILTO:allison@ebresearch.org
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DTSTART;VALUE=DATE:20250103
DTEND;VALUE=DATE:20260101
DTSTAMP:20260404T080411
CREATED:20250306T202614Z
LAST-MODIFIED:20250317T153935Z
UID:10000001-1735862400-1767225599@epidermolysisbullosanews.com
SUMMARY:Monthly Town Halls
DESCRIPTION:EB Research’s monthly Town Hall series aims to give the EB community a space to connect not just with each other\, but with our team and with leading scientists and researchers in the space to learn more about the work EBRP is funding\, understand how they can get involved\, and directly ask any questions they might have.
URL:https://epidermolysisbullosanews.com/event/monthly-town-halls/
CATEGORIES:EB Research Partnership
ATTACH;FMTTYPE=image/png:https://epidermolysisbullosanews.com/wp-content/uploads/2025/03/EBRP-Town-Hall-Event-Image-e1741285149896.png
ORGANIZER;CN="EB Research Partnership":MAILTO:allison@ebresearch.org
LOCATION:https://epidermolysisbullosanews.com/event/monthly-town-halls/
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