WELCOME TO ALS WORLDWIDE
An Oasis in the Desert of Amyotrophic Lateral Sclerosis
ALS WORLDWIDE, established in 2008 by co-founders Stephen and Barbara Byer, is a not for profit, 501(c)(3) organization, dedicated to the support of Amyotrophic Lateral Sclerosis patients and families, a disease also known as Lou Gehrig’s Disease and Motor Neurone Disease. Our efforts focus on obtaining and providing information, advice, direction, support, guidance and, perhaps most importantly, hope.
Our most important mission is to improve the quality of each day for those with ALS. To accomplish that, we seek the newest treatments for symptom relief, respiration support, reduction of excess saliva, elimination of phlegm, dietary supplements, range of motion exercises and more. All these issues are discussed and updated on our website and through ALSWW newsletters as new information becomes available.
Our son Ben Byer lost his valiant battle against ALS on July 3, 2008. For six years, we fought alongside him in his global search for treatment, wisdom, meaning, and hope. We have experienced this disease emotionally as well as cognitively, and we understand it on a deeply visceral level that goes beyond the objective practicality of science. We know that ALS can devastate the entire family system, and we are uniquely able to offer guidance. Support for patients and their families is available through individual telephone calls, emails, Skype sessions and home visits throughout the world. Bound by shared experience and profound compassion, the global ALS Worldwide community continues to grow, and it is the heart of what we do.
Stem cell research has become a global enterprise that offers great promise but also must be explained in terms that are understandable to the general public. Even members of the scientific/medical community, who don't specialize in stem cell technology, can benefit from clarification. To that end, we’ve published two books, A Patient’s Path Through the Maze of Stem Cell Transplantation, and Israel: Commitment to ALS, both viewable on this website and available free of charge in hard cover.
ALS Worldwide will continue to grow in 2013 through a number of exciting projects. One of our ongoing goals is to inform the ALS patient population about recent, current and forthcoming clinical trials, other scientific research, and upcoming conferences and symposia. “Best Standards of Practice for ALS Clinics and Hospitals,” to be published in 2013, will be the culmination of our review of ALS clinics and hospitals throughout the world and our interviews with patients, physicians, hospitals and clinics.
One of our most important initiatives is our comprehensive survey questionnaire, which we developed to identify clusters, patterns and causes of ALS throughout the world. We offer three surveys—one for patients, one for family members or caregivers, and one for the general public—which means that everyone can help in the fight to further understand this disease.
In addition to these projects, ALS WORLDWIDE educates the public, the political system and media about the challenges facing the ALS patient population. To that end, we attend symposia and conferences, have developed a series of ALS early awareness advertisements and provide presentations to a wide range of organizations. Our son Ben Byer's award winning film, INDESTRUCTIBLE, about his journey with ALS plays an important educational role.
In Ben’s honor and spirit, our commitment to all patients and their families will continue until far more effective treatments allow those with ALS to live fuller, longer lives with vastly diminished symptoms.
PATIENT AND FAMILY CONNECTIONS
Our first Patient and Family Connections newsletter, written by ALSWW's Director of Outreach and Counseling, Sarah Byer, focuses on talking to children about ALS/MND. It includes suggestions for children of all ages, from preschoolers to teenagers, along with helpful resources.
SUMMER CAMP OPPORTUNITY
The non-profit, Hope Loves Company (HLC), was started by Jodi O'Donnell-Ames after her husband passed away from ALS in 2001. HLC is now taking registrations for Camp HLC being held June 6-8, in Newton, New Jersey, a free overnight retreat for children and young adults who have or have had a parent or grandparent living with ALS.
THE MANY PARTS OF ALS
Our first contributer to the new guest editorial column, Dr. James P. Bennett, Jr., of Virginia Commonwealth University and inventor of Dexpramipexole, is a dedicated researcher on behalf of ALS/MND. In The Many Parts of ALS, he explores how separate ALS/MND discoveries can come together to paint a comprehensive picture of the disease.
NEURALSTEM PHASE I OUTCOMES
In the just-published Intraspinal neural stem cell transplantation in amyotrophic lateral sclerosis: Phase I trial outcomes, Dr. Eva Feldman and her colleagues demonstrate safety and define both the existence and potential causes of apparent efficacy.
FDA GRANTS "ORPHAN DRUG" DESIGNATION TO GENERVON DRUG
GM604, a multiple target drug that plays a significant role in nervous system development, received orphan drug designation by the FDA in March 2014, a significant breakthrough. The trial is now in Phase IIa under the direction of Dr. Hiroshi Mitsumoto of Columbia University Medical Center in New York, Dr. Nazem Atassi and Dr. Merit Cudkowicz, both of Massachusetts General Hospital in Boston.
HIGH CALORIE DIET MAY SLOW DISEASE PROGRESSION
Maintaining a healthy body weight helps ALS/MND patients preserve muscle strength, daily function and long-term endurance. A new study entitled Beware - A High Calorie Diet May Slow Progression of Motor Neuron Disease by Dr. Anne-Marie Wills at Massachusetts General Hospital in Boston, suggests that a diet high in both calories and carbohydrates could be beneficial, though this has yet to be proven definitively.
KNOPP BIOSCIENCES UPDATE
In Seeking to Improve the Lives of Patients with ALS, Knopp Biosciences discusses plans to advance Dexpramipexole as a novel investigational treatment for ALS.
NEW ALSWORLDWIDE PUBLICATION HERE
A Paradigm Shift in ALS/MND Clinic Care: Best Practices from the Patient Perspective is available online in PDF format on our website. To receive a printed complimentary copy, send your request and mailing address information to Sarah Byer.
NEW BARROW ALS/MND CLINIC OPENS IN PHOENIX
Drs. Shafeeq Ladha and Robert Bowser are co-directors of The Gregory W. Fulton ALS and Neuromuscular Disorders Center, a new multidisciplinary center for ALS/MND at Barrow Neurological Institute in Phoenix, AZ.
MEDITATION AS HEALING EXPERIENCE
Meditation can minimize symptoms of anxiety, depression and pain for both patients and caregivers. Learn more at Anxiety, depression and meditation, an interview with Dr. Madhav Goyal of Johns Hopkins.
COMPLETE THE ALS WORLDWIDE SURVEY TODAY
Please fill out the survey posted on each page of this website today. Then send the link to this website to your friends and family and ask them to fill out the survey too. You'll be helping ALS patients throughout the world. Thank You.