Most may be unaware of this, but May is national ALS awareness month. ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, is a neurological disease in which a person’s motor neurons begin to die, thus, resulting in difficulty walking, talking, eating and eventually breathing.
Due to the lack of an actual test for ALS, it can take several months – and even up to a year – to diagnosis ALS for someone. Although it is a rare disease (affecting less 20,000 people per year in the US), the disease strikes multitudes of ordinary citizens along with celebrities. Former NFL star Steve Gleason was diagnosed with ALS in 2011, and the creator of the well-known show “Spongebob” was diagnosed with ALS in 2017.
“Six years ago, I was fearful of what lay ahead,” Gleason said in a tweet on his sixth year anniversary of his diagnosis. “Today marks the six year anniversary of my ALS diagnosis, and I love my life. I feel purposeful and fulfilled with where I am. I’m excited about what is ahead.”
After his 2011 diagnosis, Gleason and his wife Michel Gleason created the Gleason Initiative Foundation – also known as Team Gleason. The foundation focuses on helping individuals with ALS, creating global conversation about ALS, and promoting ALS awareness. Gleason also debuted a documentary over the five years of his life after diagnosis called “Gleason.”
“We chose to turn our life, the good and the bad, into a film – Gleason,” Gleason said in a tweet. “Not only did we believe the film could bring awareness to ALS, but we thought our situation, which we had filmed so honestly for our own [son] Rivers, could benefit any person, who has experienced life’s adversity.”
Last week, from May 13 though the 15, hundreds of ALS patients and advocated traveled to Washington D.C. to visit Capitol Hill, to share their stories with members of Congress, and to learn about the latest ALS research. ALS patient Pat Quinn attended the conference to discuss what it’s like to lose his voice.
“Losing my voice has been one of the biggest challenges I’ve ever faced,” Quinn said at the conference.
One major victory for ALS advocates in Washington D.C. is the House approval of the “right-to-try” legislation. The bill would allow terminally or seriously ill patients to bypass drug regulators and have access to experimental treatment.
“I think many people are in that same boat, and the American people deserve a right to try,” Republican representative of Virginia, Morgan H. Griffith, said on the House floor according to the Washington Post. “I don’t understand why people are afraid of letting people try who have no other hope, whose life is going to be cut short without taking that ‘Hail Mary’ pass.”
ALS strikes people of all walks of life, and May is the month to promote awareness and support of people suffering this disease. One way to contribute to the cause is by donating to the ALS foundation. If money is tight, walking in the Dallas ALS walk this October is a great way to continue to promote ALS awareness.