Documentary About Ady Barkan’s Advocacy Will Be Featured at Democratic National Convention #rwanda #RwOT #FGO5周年

What happened: A new documentary is set to tell the story of Ady Barkan, a 36-year-old activist who was diagnosed with ALS, also known as Lou Gehrig’s Disease, in 2016. “Not Going Quietly” follows Barkan’s story of determination as he continues to push forward his causes for health care reform, which includes Medicare for All. Barkan is set to make remarks Tuesday night at the Democratic National Convention where a selection from the film will be played. Barkan recently spoke with The New York Times about the upcoming speech, living with ALS and hope.

I look at the freedom fighters past and present. People have endured such tremendous suffering, overcome such enormous structural obstacles. The human spirit is inspiringly robust. Hope is not a state of mind. It is a state of action. It is in the praxis of resistance, solidarity and love that we can find a path to a brighter world. That is how I get through the darkness. — Ady Barkan, The New York Times

Tune in tonight at 10:30pm ET to watch @AdyBarkan speak at the 2020 @DemConvention. Link in bio! @BeAHeroTeam

— Not Going Quietly (@notgoingquiet) August 18, 2020

The Frontlines: Amyotrophic lateral sclerosis (ALS) is a degenerative disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. It is often also referred to as Lou Gehrig’s disease — after the Major League Baseball player who had the condition.

  • Statistics show about 30,000 Americans currently live with the disease, with about 5,000 new diagnoses every year.
  • According to the National Institute of Neurological Diseases and Stroke, ALS can occur at any age but its onset is most common between ages 55 and 75
  • ALS was thrust into the spotlight with the viral “ice bucket challenge” on social media in 2014 aiming to raise money for research. There is currently no cure or treatment that can stop or reverse the progress of the disease.

Get more on rare disease: Sign up for our rare disease newsletter.

A Mighty Voice: Our contributor, Derek Hogg, shared his experience with an ALS diagnosis saying, “The initial shock was overwhelming, but in the three years since being diagnosed, I’ve learned about resilience, strength and love. I often rely on my training as a firefighter and paramedic, which prepared me to adapt and overcome any obstacle. This mindset helps me every day.” You can submit your first-person story, too.

Add your voice:

A banner promoting The Mighty's new Watch with The Mighty group on The Mighty mobile app. The banner reads, Are you a TV or movie fanatic? Join Watch With The Mighty to discuss your favorite fictional characters and analyze how the media portrays health conditions and disabilities. Click to join.

Other things to know: There’s a lot that isn’t known about ALS, but those who have been diagnosed and their loved ones continue to fight for awareness and continued research. You can learn more about the disease and the struggles faced by those affected by checking out what other The Mighty contributors are saying:

How to take action: You can learn more about the documentary “Not Going Quietly” here and watch Barkan’s remarks at the Democratic National Convention on Tuesday, Aug. 18 at 10:30 p.m. ET on networks carrying the Convention.


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