2019 National ALS Advocacy Conference June 9 – 11, 2019 – Washington, D.C.

Good day and Welcome to ALS News Today! I'm Amanda and I'm here to help provide information and raise awareness about ALS. I have lived in many places in the United States including, growing up in Virginia and Southern Maryland (Navy Brat). Then as an adult, I've lived in Charlotte, Northern Virginia/Washington D.C., Las Vegas, New Orleans, and I am currently living in the Panhandle of Florida. I love Football and follow the New Orleans Saints and Miami Dolphins! My happy place is being on a beach on the Gulf Coast of Florida surrounded by the soft white sand and tranquil and emerald green water. This is a cause that I am passionate about as I have lost my grandfather, father, two aunts to ALS. Right now, 2 out of my 3 cousins have ALS. Myself and my other cousin have both tested positive for the SOD1 mutation that is linked to ALS. My extended family also has an extensive history of people have/had ALS. Every day I ponder the "What ifs and When" scenarios, and I have come to realize that there is no day like today to go out and mark something off your bucket list! And there is no day like today to make a difference! Although having the mutated SOD1 gene weighs heavily on my mind, and everytime I have a muscle cramp or I trip (which is often because I am clumsy) can be overwhelming and scary; I also feel that I have been given a unique opportunity to help. To share information and experiences through a perspective that only I have. I have volunteered for several medical studies focusing on genetically linked ALS, and I am currently particiapating in a long term study at the University of Miami. When I asked the doctor in this study if I was going to get ALS, he responded that with my family history and having the genetic mutation, it is highly probable. I kind of felt like he was saying it isn't a matter of "IF" but "when." The reserachers there are working to identify biomarkers that will help identify ALS in the earlier stages, with the goal stopping the progression and ultimately preventing the onset. I've been involved with the study for about 9 years. Each year I visit the University of Miami Medical Center and undergo medical and cognitive testing. They also collect data on lifestyle and enviromental factors. The first two trips where terrifying; but now it is merely part of what I do and who I am. The advancements that they have made in this area are astonishing and I get to be a part of that even if I am just a "voluntary lab rat." A term I affectionately gave myself to deal with the unknown. I've even decided to donate my brain to ALS research, of course that after I'm done with it :) I will continue to seek out opportunities to help raise awareness, and find a cure for ALS. In the words of my favorite New Orlean's Saint, Steve Gleason, NO WHITE FLAGS!