ALS WORLDWIDE was established in 2008 in our son Ben Byer’s memory and spirit as a not-for-profit organization. Our commitment includes support of ALS patients through home visits, email and telephone accessibility 24/7; efforts to minimize symptoms and improve quality of life; research clinical trials and existing therapies; increase public awareness through education; screenings of INDESTRUCTIBLE, Ben Byer’s award winning documentary film; improve quality of care at clinics and hospitals; identification of those who prey on the patient community; collaboration between researchers, clinicians and neurologists worldwide. We support innovation such as the Diaphragm Pacer System as replacement of the vent; well-organized open label usage or IND trials for BuNaoGao, Increlex, Iplex, Lithium, Choline, Actos, Effervescent Acetylcysteine and injectible Methylcobalamin.
Information is shared through our website, ALSWORLDWIDE.ORG; monthly email newsletters; outreach through presentations, broadcasts, interviews and articles in major venues including CBS 60 Minutes, German Public Television, Good Housekeeping, The Guardian, The Times of London, World Stem Cell Report, WhyFiles, British Medical Journal, Motor Neuone Disease Association, Northeast ALS Consortium, United Kingdon National Stem Cell Network.
Major publications in 2011 include “A Patient’s Path Through the Maze of Stem Cell Transplantion” and “Israel - Commitment to ALS.”
Publication efforts for 2012 include: “Best Practices Operational Guide for ALS Clinics”; “The Cluster Effect” an analysis of ethnic, vocational, geographic and environmental causitive factors in ALS, and “Life and Living After the ALS Diagnosis.”
More than 7000 ALS patients and their families in over 70 countries have benefited from the ALS WORLDWIDE commitment.
