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 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 .Our first publication, A Patient’s Path Through the Maze of Stem Cell Transplantation, helps inform the public about stem cell technology. Israel: Commitment to ALS brought the extensive research initiatives in Israel to the public awareness. A Paradigm Shift in ALS/MNDClinic Care: Best Practices from the Patient Perspective is the culmination of visits to ALS/MND clinics throughout the world during 2012 and 2013. All are viewable on this website and available free of charge.
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 and can be viewed in its entirety.
In Ben’s spirit, our efforts to support ALS/MND patients and their families continues.
Stem Cells Today - What You Should Know
ALS Worldwide partnered with CBS 60 Minutes to help bring to justice two con men, Lawrence Stowe and Frank Morales, who each recently received five years in prison and large monetary fines because they sold phony stem cell procedures. You can view the video here.
Your own investigation is paramount to make an informed decision. There are eight questions you should ask yourself before considering any stem cell protocol or treatment.
Lymphatic Massage - Support for Swelling
For all PALS and their caregivers, general massage can help reduce stress, pain and muscle tension. Studies have found that it may aid a range of disorders, from anxiety to digestive disorders and nerve pain. It's important to find a massage therpaist trained in Lymphatic Massage. To find a massage therapist in the U.S., enter your location here. If you need support finding a massage therapist in your area, please contact Sarah Byer.
You'll find additional information about swelling and some remedies from the Forbes Norris ALS Clinic's new website which is full of resources for patients and families, AmyandpALS.
Send Us Your Photos
One of the most effective ways to raise awareness, advance research and educate the public about ALS/MND is to "put a face on the disease." Facts and figures alone just can't convey whom ALS/MND affects-our brothers and sisters, our fathers and mothers, husbands and wives, our children, best friends and those we have yet to meet.
Please send your photos, including a description (names of pictured and date), by email to [email protected], or if you prefer mail, please send to Barry M. Wein, ALS Worldwide, 125 N. Hamilton Street, Suite 1402, Madison, WI 53703.
Feeding Tubes - Q & A
In recent weeks, we have received many questions and comments regarding feeding tubes. This is a personal decision each patient must make with the support of their family, friends and doctors. Here is an overview that will answer some questions. However patients are welcomed to contact ALS Worldwide if you have further questions or would like to share your experience with a feeding tube so that others may benefit from your knowledge.
Share Your Story With Others
Kathy Keenan was diagnosed with ALS/MND in 2008 and ALS Worldwide has provided free personalized support to Kathy and her family for more than 3 years. She is an exceptional woman, who is dedicated to living her life to the fullest. In this brief video, with the help of her daughter, Kathy shares how she remains positive and engaged in her daily life and expresses her dedication to her family, friends and to life.
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.