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

August Newsletter Here

HIGHLIGHTS:

Riding Away

Doug Schneebeck shares how he gave his life a fresh purpose through competitive cycling and creating a website (www.osohigh.com) designed to help others deal with ALS.

A Mile in ALS Shoes

Bo Stern, blogger and wife of an ALS patient, describes a list of Empathetic Experiences designed for people to experience a tiny portion of what it is like living with ALS. You can read her blog at The Difference of Day.

Exercise: Helpful or Harmful in ALS

Robert G. Miller, M.D., Program Director, and Sandy McDade, RPT, Physical Therapist at Forbes Norris MDA/ALS Research & Treatment Center at CPMC share their perspectives on the importance of moderate exercise and the potential detriments of intense exercise.  They also provide the following advice: "For persons with ALS, this means first, listening to your body: stop when fatigue sets in, rather than pushing through it. Second, if you are sore the next day, you have overdone it. Soreness is breaking down muscle tissue, a bad thing in ALS. Moderation is the key, start low and move up slowly, and work with a physical therapist as a coach." 

The Importance of Exercise

Dr. Hiroshi Mitsomoto, MD, Dsc, Director of the Eleanor and Lou Gehrig ALS Clinic, Columbia University Medical Center, New York, explains how remaining active and aware in one's mind and body is ultimately beneficial. 

Optimizing ALS Care for Veterans Through Tele-Medicine

Dr. Richard Bedlack, PhD, Duke University ALS Clinic, explains why only 75% of the veterans with ALS in VISN6 have service connection, only 40% are receiving riluzole, and only 15% are getting multi-disciplinary care. He explains how they are trying to "connect these veterans to ALS-knowledgeable clinicians via 'telemedicine.' Telemedicine utilizes web cameras and free software to establish secure connections between computers. If you are a veteran with ALS, have a computer and want to try telemedicine, email Dr. Richard Bedlack. You can also watch a recent newscast to see Dr. Bedlack and telemedicine in action.

Vitamin D3

We believe in the use of Vitamin D3 as an important supplement to be taken daily by those with ALS/MND. Recommended daily dosage is up to 10,000 IU, the safe upper limit as identified in most recent studies, one of which identifies Vitamin D3 as "more beneficial than Rilutek (riluzole)." Here are some foundational articles and scientific papers that we hope you will find relevant:


The first citation is from Vitamin D Council, so one may feel they have a "dog in the fight", but their analysis does mesh well with those who may be less subjective.

The following citation is an abstract of a 2014 paper on testing of Vitamin D usage on G93A mouse model of ALS. While animal models (other than humans) may always be viewed with some skepticism, it is still worth noting.

Most recently, a very nice study appeared in the journal Neurology on the very likely relationship between Vitamin D and minimizing the impact and severity of dementia and Alzheimer disease. Considering the strong implication between Alzheimer and ALS/MND that exists, this is yet another suggestion to supplement with Vitamin D (and we prefer Vitamin D3, considered better because of its ability to be made by human skin when exposed to sunlight).

And finally, Dr. Andrew Weil, the well-known and respected Director of Integrative Medicine at the University of Arizona has written a short article that defines the benefits (many) and downsides (virtually none) of supplementation with Vitamin D and D3.

Patient Perspectives

If you would like to share your perspective, please email your story and a photo to us at [email protected].

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. 


 

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.