We're the proud parents of a 3.5 year old headstrong little girl named Farah, lovingly referred to as Secret Agent Captain Pirate Mango. She's an astronaut. A queen. An explorer. A conquerer of all that she surveys.
To us, becoming parents to this amazing little girl has been the greatest joy we've ever experienced. What wasn't the greatest was being told, later confirmed with a skin biopsy, that out daughter has EB (or Epidermolysis Bullosa), a genetic disorder that might ravage her skin and cause her pain. No parent in the world wants to hear that. We couldn't hold her at first unsure that it would damage her skin and cause her pain. The anguish and stress that EB causes to those that live and care for those with it is immense.
EB is a rare genetic disorder of the skin that makes one's skin susceptible to tearing, blisters and infection. It's the absense of Keratin or Collagen in the skin that causes the skin to bond and upon touch, friction or injury cause it to blister and tear. Rare as 1 in 20,000 to 50,000 rare.
Plain and simple, EB Research Partnership's goal is find a cure so those like my daughter can live a live free of pain and discomfort. So they don't have to second guess about an activity to partake in it. To be, well, normal functioning human beings. What makes me more excited about this work that Dr. Tolar is doing is the possibility the treatment will not only help those with EB but will also help in the treatment and cure of thousands of other genetic disorders as well.
In other words, I am not doing the half-marathon for just our family. I am doing this for every family who's lives are affected by a genetic disorder.
Together, we can make a difference. Let's do this.
EB Research Partnership wrote -
EB RESEARCH PARTNERSHIP We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.
We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth.
Leading researchers say treatments and a cure for EB are within reach—for Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.
Partner with us in our mission to further life-saving research.