ALS Awareness month is observed in May. The month-long campaign is to bring awareness of the debilitating disease commonly know as Lou Gehrig’s disease. Amyotrophic lateral sclerosis (ALS) is an incurable disease that attacks nerve cells in the brain and spinal cord that control voluntary movement.
Last summer, awareness of ALS was heightened with the Ice Bucket Challenge. Millions of videos circulated on-line and through social media which showed people dumping buckets of ice water over their heads. People then challenged their friends, family and co-workers to do the same or donate to the cause. The challenge went viral and raised over $220 million worldwide. The National ALS Association and its 38 chapters collected $115 million since the end of July.
The money raised is being put to good work, especially in cities like Chicago. The Greater Chicago Chapter received $250,000 in donations. The funds have been earmarked for clinics throughout Ill., an annual advocacy trip to Washington D.C., and new programs. A new clinic was opened in Rockford, Ill., and resources were provided to already existing clinics for patient care and to fund research for a cure.
During the month of May, people around the U.S. hold events to bring awareness of and to educate people about ALS. The ALS in the Heartland Community Walk was held Sunday in Grand Island, Nebraska. The walk was different this year because it was moved from August to May to coincide with ALS awareness month. More people attended this year, in part, organizers believe, because of the success of last summer’s Ice Bucket Challenge. Over 100 hundred people walked along Sucks Lake to support the cause. New activities were added to the event, and along with the walk, there was a festival with food and games. The organizers of the event, three sisters whose father was diagnosed with the disease last year, say the event helps raise awareness and educate people on a disease that is rarely discussed.
Many families do not need a month to be aware of the disease, because they live with it on a daily basis and cannot escape it. The Byer family of Wisconsin is one of those families. Their son and brother, Ben, was diagnosed with the disease in 2002. Ben passed away in 2008, and, with his permission, the family created ALS Worldwide a nonprofit organization, in hopes of preventing other families from having to go through what they have had to endure.
The director of outreach and counseling for ALS Worldwide, Sara Byer, does not want suffers of the disease or their families to feel isolated. “We want people to know we are here as a resource to help that.”
Working with over 15 thousand families, the Byers have offered financial support, a listening ear, and pharmaceutical knowledge, in hopes of being able to help bring about a search for new medications. They are working with scientists around the world to develop micro-neurotrophins, something they hope will reach clinical trials sometime this year.
The month of May is ALS awareness month and to observe the occasion, some advocates for the fight against the disease will travel to Washington D.C. in order to lobby for legislation to increase funding for research. Some believe that with increased funding, new treatments could reach the testing stage within the next few years, and approaches that a few decades ago would not have even been imaginable could be possible.
By Jessica Hamel
Photo by Lower Columbia College-Creativecommons Flickr License