“Fight ALS Film Fest” Aims to Shine a Spotlight on the World of ALS

Films explore universal themes of life-changing diseases through examination of ALS. Films and dialogue aim to improve understanding, uplift those affected, and expand the community.

Hico, TX, April 25, 2022 --(PR.com)-- Awareness of amyotrophic lateral sclerosis (ALS) has exploded in the eight years since the Ice Bucket Challenge captivated millions throughout the world. Last year, the Accelerating Access to Critical Therapies for ALS (ACT for ALS) bill became the most cosponsored bipartisan bill introduced in the 117th Congress and was signed into law on December 23, 2021. The ALS Congressional Caucus grew to over 200 members and federal funding for ALS research increased dramatically. This progress along with increased scientific knowledge, rapid growth in clinical drug development and greater attention by media and policymakers is making a difference. What hasn’t changed much yet is the experience of those living with ALS and those who care for them. ALS is still too often a lonely path.

The creators of the Fight ALS Film Fest hope to make it clear to those impacted by the disease that they are not alone, and that the community that understands and is committed to beating ALS is growing. Throughout May, ALS Awareness Month, films dealing with many aspects of ALS will be available for viewing online, and each will be the subject of a facilitated conversation aimed at education and support.

The Fight ALS Film Fest is the brainchild of Sunny Brous, who was diagnosed with ALS in 2015 and has since devoted her energy to helping others with ALS through SUNNYSTRONG. The program is a collaboration with Her ALS Story, ALS Therapy Development Institute, Target ALS, and Hark ALS, with the support of a grant from BrainStorm Cell Therapeutics.

“No one would argue that ALS sucks but very few people, even caregivers, really understand what facing ALS means on a daily basis,” said Sunny. “We want to start an open dialogue to graphically illustrate the challenges, fears and struggles of ALS, as well as themes of hope and endurance, which go side by side.”

Anyone can join the Fight ALS Film Fest by registering at sunnystrong.com. The film lineup to date includes:

May 1: So Much So Fast, with a discussion moderated by Carol Hamilton. Carol was inspired by this film to join the fight to end ALS. After meeting Stephen and Jamie Heywood in 2005, she has now been with ALS TDI, the organization they founded, ever since.

May 9: VICE Die Trying, with a discussion moderated by Angelina Fanous. Angelina has been living with ALS since the age of 28. A former editor at VICE, Angelina is the host of Die Trying.

May 16: Hope on the Horizon: An Expedition for ALS, with a discussion moderated by Donna York, Kelly Regan and Cara Wallem. The film documents the challenge and courage of those living with ALS, on a hike through the fierce and fantastic White Mountains of New Hampshire.

May 24: The Theory of Everything, with a discussion led by Katrina Hawking, an advocate for people living with MND/ALS and their families. She works for the ALS Association Evergreen Chapter. She is married to Stephen Hawking’s eldest son Robert. This film is the story of the renowned theoretical physicist and his wife, Jane, based on Jane’s memoir. which was nominated for many awards, including five Academy Awards, garnering one Oscar for Best Actor.

May 31: TransFatty Lives, with a discussion moderated by Patrick O’Brien. Patrick was TransFatty, a New York City DJ, internet personality and filmmaker. Diagnosed with ALS at 30, he turned his camera onto himself to document every step of his debilitating journey – TransFatty Lives.

Additional information is available at sunnystrong.com.

About the collaborators

The Fight ALS Film Fest is a partnership among those with a deep interest in combatting the disease. The collaboration includes:

· SUNNYSTRONG – SUNNYSTRONG was founded by Sunny Brous, who was diagnosed with ALS in 2015 and has since devoted her energy to helping others with ALS. SUNNYSTRONG aims to rewrite the narrative of what a life with ALS looks like and to uplift all living with ALS or caring for them.

· Her ALS Story - A group of women diagnosed with ALS before their 35th birthdays to challenge the stereotype that ALS is an older white man’s disease. Her ALS Story fosters an open dialogue about their declining health in female-centric media outlets; cultivates relationships with female lawmakers to improve current insurance and Medicare standards, and introduce legislation to speed up the drug pipeline; and raises money for the pursuit of unbiased, supercharged ALS research to ultimately end this devastating disease.

· HARK ALS - HARK provides assistance to alleviate the financial burdens faced by families battling ALS, including equipment not covered by insurance; travel expenses for pALS to visit family or attend an important family event they would not otherwise be able to afford; financial assistance for household expenses; assisting families with children during the holidays; and assistance with home modifications.

· ALS Therapy Development Institute - The ALS Therapy Development Institute (ALS TDI) is the world's most comprehensive drug discovery lab focused solely on finding treatments for ALS. This non-profit institute is led by drug development experts and people with ALS, and is funded by a global network of supporters unified to end this disease. The ALS TDI lab incorporates all aspects of drug discovery under one roof to find treatments as quickly as possible. Its mission is to continue to invent and discover drugs until everyone with ALS has effective treatments.

· Target ALS Foundation - Target ALS is a non-profit medical research foundation committed to the search for effective treatments for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. The foundation has revolutionized ALS research through its landmark Innovation Ecosystem model, fostering unprecedented scientific collaboration between academia and the pharmaceutical/biotech industry. In just eight years, this approach has led to some of the first potentially viable treatments for ALS, including six drugs currently in clinical trials.

· BrainStorm Cell Therapeutics - Brainstorm Cell Therapeutics Inc. is a leading developer of innovative autologous adult stem cell therapeutics for debilitating neurodegenerative diseases with a lead program in ALS. Brainstorm has completed a Phase 3 pivotal trial in ALS (NCT03280056) and The data is published in the journal Muscle and Nerve.
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Samantha Sadowski
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