May is Amyotrophic Lateral Sclerosis Awareness Month: Spreading Rare Disease Awareness

According to a story from ALS News Today, around 5,000 people get diagnosed with amyotrophic lateral sclerosis (ALS) annually. In addition, costs of treatment for patients average $250,000 out of pocket. These daunting statistics, provided by the ALS Association, are just some of the ones that you can share during the month of May for ALS Awareness Month. This is a time for spreading awareness about this rare disease among the medical profession and the general public.

About Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease, is a rare, degenerative disease that causes the death of nerve cells associated with the voluntary muscles. Little is known about the origins of amyotrophic lateral sclerosis, with no definitive cause in about 95 percent of cases. The remaining five percent appear to inherit the disease from their parents. Symptoms initially include loss of coordination, muscle weakness and atrophy, muscle stiffness and cramping, and trouble speaking, breathing, or swallowing. These symptoms worsen steadily over time; most patients die because of respiratory complications. Treatment is mostly symptomatic and the medication riluzole can prolong life. Life expectancy after diagnosis ranges from two to four years, but some patients can survive for substantially longer. To learn more about amyotrophic lateral sclerosis, click here.

How to Get Involved

This awareness month has been recognized since 1992, when the US President at the time, George H.W. Bush, issued an official proclamation about it. This year, the Les Turner Foundation has several activities and events taking place for people that are interested in getting involved.

May 21 will a big day for ALS Awareness Month. The foundation is holding its Hope Through Caring Gala to honor Lisa, F. Wolfe, MD, who developed a top of the line program for neuromuscular research at Northwestern University. The event will also recognize Justin Klee and Joshua Cohen, who founded a pharmaceutical company that is working on developing a therapy for amyotrophic lateral sclerosis. Learn more about the event here.

The Lew Blond Memorial 5K Walk/Run is also taking place earlier that day in Northbrook, Illinois. It’s named after a school teacher from the area who died from the disease. Proceeds will support the foundation as well as local school projects and scholarships. Click here for more info.

The ALS Association is also getting in on the action, with multiple events, such as team challenges, walks, and even golf tournaments taking place around the country. Learn more details about them here.

The organization I Am ALS is also asking for supporters and advocates to converge in Washington, DC to place 6,000 flags at the Constitution Gardens. These flags will represent the people that are diagnosed annually. Congress members have also been invited to attend.

Project ALS has organized a Don’t-Talk-A-Thon fundraiser in which participants take a vow of silence for one hour on May 29 out of respect for patients that have lost the ability to speak. Learn more about it here.

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