Most people who know me, know that my passion lies in helping people, and I am deeply committed to trying to make things better for people affected by a skin condition called Epidermolysis Bullosa (EB).

Epidermolysis bullosa (EB), is a group of rare genetic conditions that result in easy blistering of the skin and mucous membranes. Blisters occur with the slightest amount friction and are very painful. It can range from mild to severe and can often times be fatal.  There is no cure.  The only thing caregivers and parents can do is pain management with medication and wound care that requires specialized bandages that will not adhere to the skin.  These bandages are extremely expensive.  A typical monthly bill for supplies could easily exceed $15,000 for a more severe case.  

Our system is broken and there are insurance companies that see these wound care supplies as unnecessary.  It is one of the things that frustrates me the most. Those affected by EB suffer enough, they should not have to worry about how to get the supplies that are crucial to their care. Supplies that are often times life saving.

You know that blister that you get on your heel when you have a pair of brand new shoes? Remember how those blisters feel? Yeah, imagine this all over, and imagine your body not being able to heal from them. Now imagine not being able to put anything on them to protect them from further injury and infection . Doesn’t this seem ridiculous? It is.

I hope you will help me to raise funds to help bridge the gap and get supplies to families who desperately need it.  Your donation will be used to purchase supplies that will be sent to a family struggling to provide care for their child.

Watch for an update at the end of this fundraiser with a special message from a family benefiting from your generosity!