By Emma Barhydt
Elodie Kubik is three years old, a Riverside resident, and was born with a rare, life-threatening genetic disorder called Epidermolysis Bullosa, also referred to as EB. This disease means that Elodie is missing a critical protein (collagen 7) that helps bind the layers of the skin together, making her skin extremely fragile. Her skin breaks or blisters with everyday contact. There is no cure or treatment for this disease, and many children with EB do not live to see their 30th birthdays. The only option is to care for her through extensive bandages that are changed daily.
“Despite the severe pain, discomfort and challenges from her disease, Elodie remains a happy, well-adjusted little girl.” Elodie’s mother writes on her website, “She inspires us to fight daily to bring her a much needed treatment, and ultimately a cure.”
Leading researchers say treatments and a cure for EB are within reach. The EB Research Partnership grew out of collaboration between the Jackson Gabriel Silver Foundation and Heal EB, two organizations that were founded by families on separate coasts that shared a singular goal: to find a cure for their sons, Jackson Silver and Michael Fullmer, and all others that suffer from EB.
The EB Research Partnership is the largest nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening genetic skin disorders that affect children from birth.
Though they have made significant progress, they need greater resources in pursuit of a cure.
For the first time this year there will be a Plunge For Elodie taking place in Old Greenwich on Sunday, March 8th in addition to plunges in two other new locations in Staten Island, NY and San Francisco, CA.
You can show your support by plunging, cheering on the plungers, or donating and spreading the word about Epidermolysis Bullosa and Plunge for Elodie.
Location: Lucas Point Beach (opposite 3 Tod’s Driftway Old Greenwich, CT 06870)
Parking: Please park in the Tod’s point parking lot and walk north 1/4 mile to Lucas Point Beach. Limited parking will also be available in the Lucas Point boat yard opposite Lucas Point Beach.
Schedule: MARCH 8, 2020 8:00 Plunge; 8:30 leave to attend event breakfast; 8:45-10:00 breakfast and remarks at Riverside Yacht Club.
Visit: www.EBresearch.org/plunge-for-elodie.html for more information.
