Dear Friends and Family,
I am running in the 2016 Seattle Rock 'N' Roll 1/2 Marathon. This run is exceptionally special to me because it will be the first time I will be met at the finish line by my son, Michael. He is the reason I am running. I want him to see that not only am I running for him but that there are others as well that are running to raise awareness and funds so that he, and kids like him, can one day soon live a life free of Epidermolysis Bullosa.
The foundation I helped co-found, the EB Research Partnership, has raised over $8 million in the past few years and those funds have supported vital research that will ultimately lead to a cure for those living with EB now. In our call for researchers to apply for grants we received applications from across the globe requesting for funds totaling the combined amount we have raised in the last few years. Your support helps us get that much closer to finding a treatment that could dramatically improve quality of life and eventually a cure for EB.
For those that are just discovering what EB is, EB or Epidermolysis Bullosa, is a rare genetic skin disorder that affects the tolerance your skin has to contact. Those with EB are missing the gene that makes the glue that holds the layers of skin together. Encounters such as hugs, hand shakes, clothes, and food can end in blisters and skin tears. EB was recently described as a “horrendous” whole body disease. For those living with or caring for a child with EB, that description is a dramatic understatement. Your life centers around your daily medical regime of bandage changes, medications, doctor appointments, and surgeries. What an adult and child with EB deals with on a daily basis puts them amongst the strongest and most vulnerable I have ever met. What they endure in a day most haven’t experienced in a lifetime.
I know EB intimately having raised a son with severe recessive dystrophic EB. He is now 9 years old. If you’ve met him you see that he is a vibrant, smart, funny little boy. As his mom it crushes me to have to put him through anything painful like bandages changes. The look of sheer panic from anticipating the pain during the daily bandage change and the cries that result in removing the bandages and cleaning his wounds is gut wrenching and leaves me feeling outraged that there isn’t anything I can do to take away his pain. To me no level of pain a child experiences is an acceptable one. There isn’t anything I can say that I feel is enough when Michael asks, “Why do I have to have EB?”
We have really hard days and we get through them coping the best way we know how. Sometimes that includes little games. One such game we play is “If EB were”. This is a game where we come up with ways to defeat EB if it were something tangible. A recent example Michael came up with was “If EB were the joker, I would become batman and hit him with my graveling hook and swing him around.” I told him he let the joker off easy. I am obviously not a child therapist. I am a mother, a wife, a friend, a nurse, an advocate, and a sometimes half marathoner. What I am not is a researcher with knowledge and drive that can treat and cure EB. But I know some… They are so close to developing treatments and a cure and they just need our support.
They are discovering ways to inject proteins into the skin to heal wounds that haven’t healed in decades and keep them healed for months. Can you image after a lifetime spent in daily pain to have even one day free from the prison of pain. There have also been advancements with gene therapy that have shown to increase the tolerance the skin can take by applying skin grafts for relief long term and systemic forms of gene therapy are accelerating as well.
Finding a treatment and cure for this horrendous condition is our mission at the EB Research Partnership and we work hard to form partnerships to add to the longevity of our revenue so that we are able to ensure that we have adequate funds to support research until a cure is obtained.
For now, my family and others suffering with EB, will continue to cope by playing distracting games and keeping faith. Now, I know some of you I lost when I started talking about analogies for the “If EB were” game so I will share the best one we have come up with and it is, “If EB were a disease, I would cure it”. With Michael's words I now ask you this, “Are you with me?”
Partner with us in our mission to further life-saving research.