People often ask me why I fight so hard for this disease. Why I continue to work so much, even when it appears to be draining all of my energy and resources. Why I am not off doing what I love - traveling, running a business, having kids, and living like a normal person.
They are right. Establishing a nonprofit might have cost me my for profit, something that I cared deeply, passionately about and gave up my life savings and then some to start. It has taken a tremendous amount of time and energy away from people I care about, and kept in front of me some things many have long wished to have put in the past. It has come between many living relationships, because most people do not understand why I would want to be constantly reminded of something that has caused me so much pain - something that caused my family so much pain and everyone would long wish to forget.
