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.

NEWSFLASH

July Newsletter Here

HIGHLIGHTS:

The Importance of Independence

Kathy wanted to share how she has found greater independence during meals in a lively household thanks to the arm assist.

Engergy and Nutrition

It is important to maintain a healthy body weight to preserve muscle strength and energy. Power shakes such as Boost VHC, Nutren 2.0, Fortisip, and TwoCal HN, available through Abbot Nutrition, are recommended.

Tips for meal planning include drinking thicker liquids and avoiding dairy products.  Maintaining Good Nutrition with ALS is an excellent guide to review.

Living Large

Matt Chaney wrote his personal perspective on how he is still alive after 14 years of living with ALS using one toe and his IPad. If you would like to share your perspective, please email your story and a photo to us at barrymwein@als[email protected]

Genetic Testing Survey for Healthcare Professionals

Owen Thorpe is a student of Professor Orla Hardiman, Head of Academic Neurology, at Trinity College Dublin. They have designed a survey aimed at gathering information on the role of genetic testing in Familial ALS (fALS). If you are a healthcare professional, we hope you'll consider completing the survey, therefore helping answer some questions surrounding this topic. The survey takes around 15 minutes to complete and can be found at: https://www.surveymonkey.com/s/3PM597K.

Keeping Your Stem Cells Healthy

Dr. Knoepfler shares his view, which we firmly agree with, on five possible simple ways that research suggests theoretically might be helpful to give your existing so-called autologous (or endogenous) stem cells a boost. The five ways include excercise (Macaluso and Blackmore), caloric restriction and fasting, Tai Chi, sleep, and protecting yourself and your stem cells from radiation.

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. 


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.

 

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.