The Bernie Nicholls Foundation was founded to help underserved youth and their families. In 1992 Bernie Nicholls and his wife had a son named Jack. Jack passed away six days before his first birthday. As a parent who has lost a child, Bernie understands the heartache and trauma this can cause a family. He is dedicating his time and efforts to find ways to assist families who are faced with difficult challenges and the charities that support them.
The Bernie Nicholls Foundation has chosen this year to raise funds to help families that are facing the daily challenges of Epidermolysis Bullosa (EB). Babies born with EB are known as "butterfly children", as their skin is as delicate as a butterfly's wing. EB patient's skin does not produce collagen-7, a protein that acts as the "glue" and elasticity that holds the layers of skin together. As a result, EB skin is extremely fragile. The slightest trauma causes the skin to shear and blister, leaving behind wounds equivalent to those created by third-degree burns - and depending on the EB type, sometimes recurring daily. Severe cases have an increased risk of complications as EB can affect many internal organs and result in skin cancer, disability, disfigurement, and early death (in some cases) within the first few months of life. At present, there is no treatment or cure. Daily wound care, pain management, and protective bandages are the only options available.
DEBRA Canada is a voluntary, registered charity that stands together for Canadians affected by Epidermolysis Bullosa (EB) in raising awareness, supporting the community through their programs, services, education, advocacy, and research.