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ALS WORLDWIDE does not offer or purport to offer medical advice to patients or their families.

Recommendations and suggestions are intended to minimize symptoms, improve the quality of life and should be discussed with family, caregivers, neurologists, other physicians and support groups.

PUBLIC ADVOCACY AND AWARENESS

Knowledge is power. Even now, Amyotrophic Lateral Sclerosis remains a little known disease by most. ALS strikes without warning -- anyone, anywhere, anytime. Ask ten people and two know someone who has been affected by this disease.

ALS WORLDWIDE speaks out on behalf of those who cannot speak for themselves. The rapid paralysis that overtakes the body consumes lives with a vengeance. Family members often become overwhelmed and exhausted from the day-to-day care coupled with household chores, family needs, personal care, financial stress and professional demands. Little energy remains to bring focus and attention to the plight of the ALS community.

Educating the public, reaching out to public officials, demanding greater research support by the government on both state and federal levels are priorities accomplished in two very distinct ways. One is through screenings of the film, “Indestructible” which offers an intimate, visceral experience of the life of an ALS patient as it explores the life of Ben Byer and his journey. A personal DVD copy of the film can be obtained at www.indestructiblefilm.com. In addition, outreach programs, demonstrations and literature distributed to the public, are integral to the aspirations of ALS WORLDWIDE.

This recent article appeared in The Examiner, written by Daniel Popeo, Chairman and General Counsel of the Washington Legal Foundation, summarizing the ongoing Iplex issue and the ramifications presented.

INDESTRUCTIBLE

“In September of 2002, at 31 years of age, I was diagnosed with ALS, a neuro-degenerative disease that kills 90% of its victims within five years. At the time, I was working as a playwright and actor in Chicago, running a painting company and changing my son's diapers. Nine months later I began to make a documentary film chronicling my new life, not one I had chosen and unlike anything I ever could have imagined. Traveling by myself and then with a small crew we filmed the isolated world of ALS; interviewing patients and their families, medical professionals, scientists, religious figures and almost anyone we could find. I wanted to know (perhaps naively), “What does it all mean?”

Indestructible is an attempt to understand and accept the reality of a mysterious and deadly disease that has brought science to its knees, an illness that is a paradigm for life's ultimate challenges. My personal story in the film, and that of every ALS patient, follows this frightening path into an uncertain future. To show the broad and difficult landscape of medicine for ALS, or lack thereof, we have documented mainstream approaches, controversial stem cell surgeries, Chinese herbal treatments, vitamin supplements, vibrating beds, Yoga, and almost anything that might stop the progression of this horrific killer.

My initial purpose in making this film was to share the extraordinary moments, both dark and light, of a life with ALS, and there are many. I now believe Indestructible will be a catalyst, and mark a turning point for the millions who have and will suffer the wrath of this elusive beast, bringing us one step closer to what every sick person wants - a cure. Indestructible has at times provided answers to my questions, if only momentarily, and they are no substitute for my health. In the meantime, I will continue to search. When we unlock the secrets of ALS we will better understand not only neuro-degeneration, but also aging, environment, psychology, spirituality, and what it truly means to be both alive and facing mortality every day.”

-Ben Byer - March, 2004, www.indestructiblefilm.com

IPLEX DEMONSTRATION

CALL TO ACTION BY THE ALS COMMUNITY RESULTS IN SETTLEMENT AGREEMENT TO RELEASE IPLEX!

A Successful Public Protest, Advocacy and Demonstration took place in Washington DC on Tuesday, November 11, 2008. Team Iplex, an organization of ALS patients and caregivers who devote their time, energy and resources toward securing IPLEX for those with ALS convinced Genentech, Tercica and Insmed to resolve their legal dispute and release IPLEX to the ALS community. A deluge of letters, emails and phone calls resulted in an agreement reached on November 7, 2008, just days before the demonstration took place.

Nearly 100 participants gathered in front of the U.S. Capitol Building to draw attention to the plight of ALS patients. Literature was passed to inform the public and buttons distributed. Patients, caregivers, friends, relatives, reporters, filmmakers came to give their support to the cause.

But the fight is not over. As of January 8, 2009, IPLEX remains unavailable to the ALS community. ALS WORLDWIDE has helped dozens of patients through the IND/IRB protocol required by the FDA. But we have just learned that the FDA has rejected Iplex usage by ALS patients due to 'unsubstantiated claims of higher mortality' and 'excessive blogger interest in Iplex.' The fight continues.

FDA Denies IPLEX