Fight ALS Film Fest Aims to Continue the Momentum to Beat ALS
The second annual Festival will explore universal themes of life-changing diseases through examination of ALS.
Waco, TX, April 26, 2023 --(PR.com)-- In collaboration with Her ALS Story and The ALS Therapy Development Institute (ALS TDI), The Fight ALS Film Fest will kick off their second annual festival. Throughout the month of May – ALS Awareness Month -- The Fight ALS Film Fest will invite community members to screen documentaries focused on the many aspects of Amyotrophic Lateral Sclerosis (ALS). Each film will be the center of hosted discussions to improve understanding of the disease, uplift those affected, and expand the ALS community. The Fight ALS Film Fest was founded by Sunny Brous, who was diagnosed with ALS in 2015 and has since devoted her energy to helping others with ALS through SUNNYSTRONG, with the support of a grant from BrainStorm Cell Therapeutics.
Awareness of ALS exploded in 2014 with the Ice Bucket Challenge captivating millions throughout the world. The momentum to find treatment for this fatal disease has continued, with a new drug approved last year, Qalsody recently approved for a form of genetic ALS, and NurOwn currently under FDA review.
This year’s Fight ALS Film Fest is hosted by Her ALS Story. This dynamic group of women seeks to raise awareness that ALS impacts young women diagnosed before 35 and provide a community for them to connect, learn from each other, and find support so they can live their best lives.
"We are proud of Sunny’s dedication to create such an impactful film series and are truly honored to be a part of this year's festival,” said Leah Stavenhagen, Founder and President of Her ALS Story. “As a community-driven organization, we believe that events like this are crucial to pulling back the curtain on what it’s really like to continue to live despite ALS.”
“Continuing the success of last year’s festival, this event is shaping up to be even bigger and more impactful,” said Sunny Brous, founder of SUNNYSTRONG. “Increasing awareness and further shining a light on the realities of ALS will engage more people to join our fight and lead our community to discovering more treatments and eventually to cures.
The Fight ALS Film Fest is open to the public, offering viewing of the documentaries through May by registering at als.net/alsfilmfest. Watch the films online at your convenience and then join their group discussions.
May 2: Go On Be Brave, with a panel discussion including Andrea and Dave Peet, Filmmakers Miriam McSpadden and Brian Beckman. This is a film about Her ALS Story member Andrea Lytle Peet’s race against time-a diagnosis of ALS and an attempt at the impossible: to be the first person with ALS to complete a marathon in all 50 States.
May 7: Augie, with a discussion moderated by Lynne Nieto. The movie follows Augie and Lynne Nieto in their fight to cure ALS. Theirs is a remarkable story, an unlikely and enduring love story, one that also is changing the way ALS treatments and research are funded and advanced, with exercise and fitness a key piece of the puzzle.
May 14: It’s Not Yet Dark, with a discussion moderated by Ruth Fitzmaurice. The film documents the groundbreaking story of Simon Fitzmaurice, a talented young Irish film maker with ALS (MND), as he embarks on directing his first feature film though the use of his eyes and eye gaze technology.
May 23: From the Passenger Seat, with a discussion led by Gabe Rovick and Cindy Wyman. The story is an educational adventure film that explores one man's exceptional life, his heroic two-year battle with ALS and an epic farewell road trip.
May 31: Matter of Mind: My ALS, with a discussion moderated by Michele Stellato and Charlie Wren. Premieres May 1 on PBS. Matter of Mind: My ALS | Meet Three People With Neurodegenerative Disease ALS (pbs.org). In this intimate exploration, three people with ALS, bravely face different paths as they live this progressively debilitation illness.
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.
· 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.
· 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.
Awareness of ALS exploded in 2014 with the Ice Bucket Challenge captivating millions throughout the world. The momentum to find treatment for this fatal disease has continued, with a new drug approved last year, Qalsody recently approved for a form of genetic ALS, and NurOwn currently under FDA review.
This year’s Fight ALS Film Fest is hosted by Her ALS Story. This dynamic group of women seeks to raise awareness that ALS impacts young women diagnosed before 35 and provide a community for them to connect, learn from each other, and find support so they can live their best lives.
"We are proud of Sunny’s dedication to create such an impactful film series and are truly honored to be a part of this year's festival,” said Leah Stavenhagen, Founder and President of Her ALS Story. “As a community-driven organization, we believe that events like this are crucial to pulling back the curtain on what it’s really like to continue to live despite ALS.”
“Continuing the success of last year’s festival, this event is shaping up to be even bigger and more impactful,” said Sunny Brous, founder of SUNNYSTRONG. “Increasing awareness and further shining a light on the realities of ALS will engage more people to join our fight and lead our community to discovering more treatments and eventually to cures.
The Fight ALS Film Fest is open to the public, offering viewing of the documentaries through May by registering at als.net/alsfilmfest. Watch the films online at your convenience and then join their group discussions.
May 2: Go On Be Brave, with a panel discussion including Andrea and Dave Peet, Filmmakers Miriam McSpadden and Brian Beckman. This is a film about Her ALS Story member Andrea Lytle Peet’s race against time-a diagnosis of ALS and an attempt at the impossible: to be the first person with ALS to complete a marathon in all 50 States.
May 7: Augie, with a discussion moderated by Lynne Nieto. The movie follows Augie and Lynne Nieto in their fight to cure ALS. Theirs is a remarkable story, an unlikely and enduring love story, one that also is changing the way ALS treatments and research are funded and advanced, with exercise and fitness a key piece of the puzzle.
May 14: It’s Not Yet Dark, with a discussion moderated by Ruth Fitzmaurice. The film documents the groundbreaking story of Simon Fitzmaurice, a talented young Irish film maker with ALS (MND), as he embarks on directing his first feature film though the use of his eyes and eye gaze technology.
May 23: From the Passenger Seat, with a discussion led by Gabe Rovick and Cindy Wyman. The story is an educational adventure film that explores one man's exceptional life, his heroic two-year battle with ALS and an epic farewell road trip.
May 31: Matter of Mind: My ALS, with a discussion moderated by Michele Stellato and Charlie Wren. Premieres May 1 on PBS. Matter of Mind: My ALS | Meet Three People With Neurodegenerative Disease ALS (pbs.org). In this intimate exploration, three people with ALS, bravely face different paths as they live this progressively debilitation illness.
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.
· 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.
· 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.
Contact
ALS Therapy Development Institute
Meghan Lawlor
(978)729-2961
www.als.net
Meghan Lawlor
(978)729-2961
www.als.net
Contact
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