A preview trailer can be viewed at: http://als.vice.com/.
Living with ALS, Egyptian-born Fanous is now focusing on public health stories. Her memoir, “The Guide To Dying Young”, will be published by Seal Press in 2017.
Fanous shared some of her experiences dealing and coping with her ALS diagnosis in a March 2015 account of a journey home to visit her family, members of Egypt’s Coptic Christian minority. She was still wearing her investigative reporter hat. (Photo Courtesy HBO)
Friday’s VICE episode looks at how the 2014 Ice Bucket Challenge raised millions of dollars for ALS. But also that while the intensified social media has given new life to ALS awareness and research, there is still currently no cure or effective treatment for ALS, and access to experimental drugs is still limited.
In the VICE episode, Fanous meets with patients and top researchers throughout the United States to investigate what is being done to tackle the devastating disease and the regulatory hurdles faced by ALS patients and drugmakers alike.
“Die Trying” is particularly timely given the Right to Try bill recently introduced by Senator Ron Johnson (R-Wis.) – legislation that would give terminal patients the right to try experimental drugs that could potentially ease their symptoms or even save their lives.
ALS (Amyotrophic Lateral Sclerosis also known as ‘Lou Gehrig’s Disease’) is a progressive neurodegenerative disorder, characterized by the degeneration and death of motor neurons that connect the brain to muscles. It causes loss of muscle control, the ability to eat and swallow, loss of mobility, and speech, and eventually impacts the ability to breathe. Life expectancy after diagnosis typically ranges from two to five years, although the Cambridge, Massachusetts based non-profit biotech ALS Therapy Development Institute notes that at least one in 10 patients live more than 10 years following diagnosis.
According to the Institute, someone is diagnosed with ALS every 90 minutes. The institute is committed to combatting this disease and finding a cure, and is funded entirely with donations. For more information, visit: https://www.als.net/donate/mobile/?cta=vice&soc=fb
VICE on HBO’s “Die Trying” episode debuts on HBO this Friday, June 17 at 11:00pm.