On Wednesday, Nov. 10 St. Anne Catholic School in Tomball will be hosting “Gaming for EB,” a fundraising event in honor of fellow student, Daniel Rios, who has Epidermolysis Bullosa (EB). His courage and love of video games brought about students and parents to organize this event.

EB is a painful and rare genetic skin disease characterized by skin so fragile that the slightest friction causes severe blistering — inside and outside the body. EB children are referred to as “Butterfly Children” – their skin is as fragile as a butterfly’s wing. 

As of now, there is no cure for the debilitating disease and the only treatment is daily wound care, bandaging and pain management.

“Gaming for EB” benefits the Dystrophic Epidermolyisis Bullosa Research Association of America (DebRA), the only national non-profit organization dedicated to funding research providing supportive services to patients and families with EB.

DebRA has helped fund 30 research grants in nine countries. Their programs and services include an EB Nurse Educator, Family Crisis Fund, Wound Care Clearing House and a New Family Advocate Program, all helping to improve the lives of those suffering with EB.

St. Anne is asking local businesses and citizens to consider lending their support to “Gaming for EB” by sponsoring one of the event’s participants to “game” for 30 minutes. 

For additional information about EB or DebRA, visit www.debra.org. 

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