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’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.
PRECISION STEMCELL REPORT UPDATE
Dr. Leigh Turner, one of the nation's foremost bioethicists, has recently reaffirmed the conclusions drawn by Dr. Peiman Hematti and Stephen Byer about the Precision StemCell procedure. Previously unknown to ALSWW, Dr. Turner had already investigated Precision StemCell in December, 2012. His letter, Written Notice to FDA, in which his concerns are extensively detailed, can be read in its entirety. Interestingly, these two totally independent investigations are remarkably parallel, citing the same concerns. We appreciate this highly regarded bioethicist, pharmacologist and stem cell researcher for allowing us to reprint his investigatory letter to FDA.
In February 2013, Dr. Peiman Hematti and Stephen Byer determined that the Precision StemCell procedure is both ineffective and potentially dangerous. Dr. Jason Williams stated his intention to discontinue this procedure in the U.S. However, he plans to move his operation to Bogota, Colombia. The complete discussion can be reviewed in detail at Precision StemCell. Dr. Leigh Turner also wrote about Precision Stem Cell on his blog, Health in the Global Village, in a post entitled "Precision StemCell: Selling Stem Cells & Treating Individuals with ALS as Human Guinea Pigs."
ALSWW FOCUS - A NEW LOOK
Our new, updated format under the Medication and Devices section of our website is clear, concise and attractive. We hope you find it to be a simpler, easier way to discuss options with your doctor.
BRAINSTORM CLINICAL TRIAL IN US EXPANSION
BrainStorm’s Phase I/II clinical trial successes of their NurOwn stem cell technology. Positive resullts have resulted in an expansion to a multi-center Phase II trial in the US, expected to begin mid-2013. To read more, see the NEWS PAST AND PRESENT page on our website.
NEURALSTEM IN 2013
Fast track approval by FDA was helped in large part by the tenacity and vision of the ALS community at the FDA Hearing in February 2013 resulted in an expansion to five trials throughout the world in 2013.
FDA HEARING ON ALS TREATMENTS - FEBRUARY 25, 2013
Sixty presenters, including patients, neurologists, neuroscientists and advocates stated views about improving and speeding up ALS research to the FDA panel. Dr. Russell Katz, moderator of the forum and Director of the Neuropharmacological Products at FDA stated clearly, "We hear you (the ALS community) and will be working very hard to move this forward in a constructive and forceful manner."
The ALS WORLDWIDE Presentation, available on this website, focuses on both the present trial construct which has failed to produce approved treatments and six recommendations for change.
PRECISION STEMCELL REPORT
After a thorough review in February 2013, Dr. Peiman Hematti and Stephen Byer determined that the Precision StemCell procedure is both ineffective and potentially dangerous. Dr. Jason Williams stated his intention to discontinue this procedure in the U.S. However, he plans to move his operation to Bogota, Colombia. Precision StemCell discusses in detail the issues that led to this conclusion.
KNOPP SUES BIOGEN IDEC
Requests for blood samples by Knopp denied by Biogen Idec. Hearing may occur as early as June.
Target ALS is the next phase of an accelerated research initiative, focused on building the rapid scientific progress of the past three years through a new collaboration that pools the efforts of dozens of scientists and laboratories.
For relief of limb symptoms, Dr. Michael Weiss is the Principal Investigator for the clinical trial. Further Information.
TIZANIDINE VS BACLOFEN
A comparison of these two medication reveal differences in side effects, discussed in the February 8, 2013 newsletter.
NEW PERSONNEL AT ALSWW
Administrator, Chloe Benjamin and IT consultant Jared Sanchez have both joined our team.
THE TEAM GLEASON HOUSE TO OPEN
Second home in the US for ALS and MS patients due to open in New Orleans in the spring of 2013, modeled after the Leonard Florence Center for Living in Chelsea, MA.
TWO NEW SEARCH ENGINES NOW AVAILABLE ON THE ALSWW WEBSITE
COMPLETE THE ALS WORLDWIDE SURVEY TODAY
Please fill out the survey 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.
MEDICARE TO COVER MORE HEALTH SERVICES
All patients will be able to receive in-home speech therapy, occupational therapy, skilled nursing care and other therapies. More Information is available at Hook Law Center and Medicare Advocacy.
NEWLY DISCOVERED BIOMARKER FOR LOU GEHRIG'S DISEASE COULD LEAD TO NEW THERAPY click here to read article