A member of the American Brain Foundation discusses the organization’s role in the development of Alzheimer disease management and improvement in education.
Neil Minkoff, MD: Mr. Gasby, I am going to assume that there is a level of frustration that you felt as a caregiver, as a family member, hearing about all the different voices we are paying attention to, to try to make these policies, to try to make coverage decisions. It is not fun to see, as they say in the cliché, the sausage get made. I know that the American Brain Foundation tries to do work with patients and caregivers to help them navigate through all of this. Could you talk a bit about that work and discuss the screening, early detection, and therapeutic options work that is done through your foundation?
Dan Gasby: The great thing about the American Brain Foundation is that they look at the brain in total. They look at all of the diseases, whether its Alzheimer disease, epilepsy, or Lewy body dementia, or ALS [amyotrophic lateral sclerosis], or MS [multiple sclerosis]; they are all connected. What we are trying to do is get people aware of things, and give young people who are in the business of medicine an opportunity to make the choices and go into these professions, so that they can better come up with new and bright ideas to make a difference. Their perspective may be a little forward-thinking, out of the normal, or out of the box.
I think I can speak for Richard, and he is a dedicated professional. It has to be extremely difficult every day to know that you are doing everything you can, but we have not unraveled the science to get to the cure. The frustration is this: I have learned that hate is sometimes good, to be quite honest with you, not to fear it but to hate it, so that you fight and keep fighting no matter what. That is why I joined the organization. That is why I joined the foundation. We are doing everything. We are bringing young people in. We are sponsoring grants. We are talking and trying to get people to look at the brain in its totality, as well as look at the individual diseases that affect millions and millions of people. We are fighting an enemy that is still ahead of us so far, but we are making strides. We have not lost. We are fighting battles, and we have not lost the war, but it is difficult.
I can tell you that there were times when I used to say it was like being in hell without the heat to see someone who could do everything suddenly not be able to do anything, to see someone who you know has lost their humanity. You are trying to protect their dignity, and you are trying to keep your sanity. It is a difficult thing, and that is why I joined the American Brain Foundation because I wanted not to feel totally impotent to this disease. If someone finds a cure for epilepsy, Lewy body dementia, or Parkinson disease, I understand that they are all connected to neurology, and I know that we are moving forward. As Mike said, the toll it takes on you is unbelievable. You are in a freefall all the time. You are at DEFCON 4 [defense readiness condition level 4]: you never get to relax. That is why I am here tonight. That is why I am going to continue. All of us, one way or another, have some sort of connection to one of these diseases that robs a person of their very humanness, and that is why I am a member of the American Brain Foundation.
Transcript edited for clarity.