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.
FEBRUARY 20, 2013 NEWSLETTER NOW AVAILABLE:
Major ALS/MND Developments -- A Must Read!
NEW GENE IDENTIFIED
Eighteen years ago, it was thought that SOD1 was the only gene related to ALS/MND. Today, a greater understanding of the human genome system has resulted in the discovery of over twenty additional genes with more likely on the horizon. By identifying the gene MMP-9, Columbia University Medical Center has contributed an important clue as to why only voluntary muscles are involved in ALS/MND.
N-ACETYLCYSTEINE AND ALS/MND
Congestion is a serious issue for many ALS/MND patients. A new paper by researchers at the University of Alabama supports the efficacy of N-Acetylcysteine (NAC) to break up phlegm and mucus. Because it is most effective in effervescent form, the product PharmaNac is an excellent source.
NEURALSTEM OFFERS HOPE FOR ALS/MND
THE ALS/MND DIAGNOSIS
The very best approach to delivering a message that no one wants to give or receive is to include hope, compassion and reality. Choosing the right words for the neurologist and diagnostician is critical.
FAMILY AND PATIENT CONNECTIONS
Sarah Byer, Director of Counseling and Outreach, writes, "One reason I wanted to join ALS Worldwide is to offer my support and experience to patients and families. What does that look like? I'm available to Skype, email or talk about how things are going, how a caregiver is doing, how children are coping, what resources are available through ALS Worldwide, and any other topic you or a loved one would like to discuss A.re there topics that you would like to know more about? Or maybe you have some ideas of your own that you would like us to share with others. Please share any ideas or areas of interest with me at [email protected] or by phone at 608.630.0407."
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.
NATIONAL INSTITUTE OF HEALTH PROPOSAL
he National Institute of Health is in full agreement that the complex system of biomedical research is in need of restructuring. With support from both scientists and laypeople, significant interventions are underway, described in Policy: NIH plans to enhance reproducability.
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.
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.