My name is Amanda Duran. My mother, Ormenia Duran, is an 1199 member at Jamaica Hospital in Queens. When we found about the 1199 ALS challenge we were so excited and so grateful.

My family has seen the devastating effects of ALS (Lou Gehrig’s disease) first hand. My father, Porfirio Duran was diagnosed with ALS in 2001.

Having ALS means being trapped in your own body.

You may have heard of ALS but you may not know how the disease affects the body. ALS is a degenerative disease that affects nerve cells in the brain and the spinal cord and eventually leads to death. You slowly start to lose control of your motor skills; however, it leaves your mind perfectly intact. In the final stages of ALS, you’re imprisoned in your own body.

ALS is devastating for patients and their families. The patients feel isolated as they find themselves in a body that no longer works. Their family members become their only outlet to the world as they become more and detached from it.

My father’s diagnosis hit my family hard. It started in my father’s head, then he lost his voice. At the end, he could only communicate by blinking. Our entire lives revolved around his care—medical visits, monitoring his respirators, dealing with his lost mobility. We took care of him at home for 6 years with the help of a home attendant. Most ALS patients pass away within 3 years of diagnosis. The treatment we and his homecare worker gave him was able to extend his life to six years after his diagnosis.

It was painful to watch him deteriorate but he remained an inspiration to us until he lost his battle to ALS in 2008. I remember, near the final stages, my father would communicate by touching letters spelled out on the ground. Even in that state, he would still tell jokes and recount his favorite memories of us.

Fundraisers like the 1199 ALS Ice Bucket Challenge Make a Difference

ALS is becoming more common and many people still don’t understand the illness. There's still a lot of work to be done to raise awareness. Since my father passed away, I’ve become very active in volunteering for ALS. We have a fundraising team in my father’s honor. I’ve participated in several ALS events and I can tell you that your participation in 1199’s attempt to break the Guinness World Record will bring a lot of hope to patients and families like mine who have battled this disease.

If you’ve already signed up to participate on Saturday, I thank you from the bottom of my heart. If you haven’t yet, I encourage you to join. I’ll be there in memory of my father.

Sign up online to participate at www.1199seiu.org/icebucket. and bring your friends! You’ll be doing a lot to raise awareness of this devastating illness.