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.
NOVEMBER 25, 2013 NEWSLETTER NOW AVAILABLE:
THANKSGIVING / CONTACT SPORTS / DRUG SCREENING / NEW STAFF
Giving thanks this holiday season. . .
We would like to take this oppotunity to thank everyone who champions ALS/MND patients -- family, friends, colleagues, neurologists, clic coordinators, medical and health care professionals, neuroscientists. And thank you to the many dedicated supporters who have been steadfast partners in our mission.
WELCOME TO SARAH BYER
Director of Outreach and Counseling
We are pleased to announce that Sarah has joined the ALS Worldwide team with more than 15 years of experience working with non-profit organizations. She is sharing both her professional skills and personal experience with our ALS/MND community.
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.
IMPROVED QUALITY OF LIFE
Dr. Raymond Onders describes benefits for ALS/MND patients through the use of a suprapubic catheter.
NEW SHORT FILM ABOUT STEM CELLS
An excellent and award-winning film, A Stem Cell Story, discusses what stem cells are, where they come from, and how they can be used.
CONTACT SPORTS AND ALS/MND
While researchers continue to explore the myriad causes of ALS/MND, one thing is clear: Football and Soccer players are at a significantly higher risk.
NEW STAGING SYSTEM
Professor Ammar Al-Chalabi of King's College London has presented A Proposed Staging System for Amyotrophic Lateral Sclerosis with implications for all clinical trials for ALS which offers new, relevant approach.
PROMISING DRUG SCREENING METHOD
Researchers at the University of Central Florida have a new idea: silicone chips infused with neurons which record electrical activity when a disease model is introduced in-vitro.
RESOURCE FOR CARE
The My Senior Care Guide is a nationwide resource that helps US patients find care for their loved ones in their home town. Part time, full time, live in, adult care for all kinds of patients. A good resource to keep on hand. Plus they can help those on medicare navigate through the services provided.
PAIN IN ALS/MND
Pain is not a primary consequence of ALS/MND, but it does occur as a secondary symptom in a significant number of patients due to musculoskeletal pain, muscle cramping, and spasticity. A 2011 study through Emory University recommends range of motion exercises, physical therapy and NSAID pain medications. More in-depth options are in development.
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.