Leaders of the Burroughs Extra Hands for ALS Club invited Steve Ziegler and Lynn Hogan to speak about ALS at assembly on Friday, November 11.
Ziegler, who has ALS, and Hogan met at Boeing where they both work. Hogan spoke briefly, acknowledging that they are "100 percent dependent on the compassion of others" and encouraging every student "to help somebody else ~ it lifts such a burden."
Ziegler explained that ALS, also known as Lou Gehrig's Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. People in late-stage ALS are completely paralyzed ~ they can't swallow or breath on their own. He said 6,000 new cases are diagnosed every year in the U.S., the disease usually presents between the ages of 40 and 70, and, after diagnosis, the average life span is two to five years. He said there is no effective treatment or cure.
Ziegler then talked about his own fight with ALS. After experiencing unusual muscle twitching and weakness, he underwent a battery of tests and was diagnosed in February 2015. During the past year and a half, he said he has gone from being completely independent to completely dependent ~ he has lost the use of his arms, legs and core muscles. In preparation for what he knows will come, he has a feeding tube and has begun to prepare for speech loss.
Despite this irreversible degeneration, Ziegler is committed to being active and social. He has a five-year-old son who he takes to hockey, swimming and pre-school. He has become an active advocate for ALS ~ traveling to D.C. to speak with legislators, attending conferences, helping write a guidance document for drug development with the FDA. He praised the ALS Association which supports home adaptation, equipment, work days, counseling, advocacy and R&D.
Ziegler said what keeps him fighting are his son, his friends and family, and the 20,000 others in the U.S. who have the disease, as well as their families. He told students that no matter what your personal obstacles, "you can still make a difference in the lives around you ~ and just a little bit of hope can go a long way."