WELCOME TO ALS WORLDWIDE
An Oasis in the Desert of Amyotrophic Lateral Sclerosis
ALS WORLDWIDE, created by Stephen and Barbara Byer, is a
not for profit organization for ALS patients and their families to obtain information, advice, direction, support, guidance and, perhaps, most importantly, hope.
Improving the quality of each day matters most for so many. To that end, the newest treatments for symptom relief, dietary needs, range of motion exercises, assistance for respiration, reducing excess salivation and more are discussed and updated frequently.
ALS frequently devastates the entire family system. Support for both patients and family members is available through individual telephone and email contact. Sometimes it helps to just connect with someone who truly understands the challenges of ALS.
Stem cell research has become a global enterprise that offers great promise but also needs clarification and explanation in terms that are understandable to those who are not scientists. Ongoing and upcoming procedures are discussed in detail.
ALS WORLDWIDE brings the needs of the ALS community to the awareness of the public, the political system and the media. Getting Iplex and Increlex, two experimental but effective medications, to those with ALS are examples of our effort in these areas. The Stem Cell procedure in Monterrey Mexico is another example of how ALSWW crosses international borders to help those with ALS.
Our son Ben Byer lost his valiant battle against ALS on July 3, 2008. In his honor and spirit, our commitment to all patients and their families continues until more effective treatments allow those with ALS to live fuller lives with vastly diminished symptoms.
NEWSFLASH
SOCIAL SECURITY SIMPLIFIED
The Good News
Social Security Commissioner Michal Astrue made the Compassionate Allowances initiative a top priority soon after he began his tenure as Commissioner in 2007. Social Security launched the Compassionate Allowances program in 2008 with a list of 50 diseases and conditions, including ALS. There are now more than 100 Compassionate Allowances conditions - and counting. Commissioner Astrue's dedication to Compassionate Allowances has earned him a humanitarian award and the attention of President Obama.
"Commissioner Astrue has worked tirelessly to ensure that disabled Americans receive the Social Security disability benefits they've earned in a timely way," said President Obama.
Accessing your Benefits
The Social Security Administration has done a great job of creating a fact filled website to help citizens through the labyrinth of information and opportunities it offers. However, ALS patients looking for specific information for their needs can find the search both daunting and exhausting. To help make this task a little easier, we've put together a document with links to those pages that are most relevant for ALS patients. We hope you find this a helpful tool. You'll find detailed information at Social Security Information.
THE ALS CLUSTER SURVEY
Most of the time, we share information about ways in which we and others assist the ALS patient community. Now we need your assistance.
ALS WORLDWIDE is conducting a comprehensive survey as part of a two-year research study of Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease).
Every reader can participate by spending the 20 to 30 minutes it will take to complete one of the following questionnaires through Survey Methods at the following links:
- Anyone from the general public, including medical professionals, can complete the GENERAL SURVEY (control group).
Through the information obtained, we will create an extensive database and interactive online map that will identify all suspected or reported clusters, patterns and hotspots of the disease around the world.
Please contact Rebeccah (Byer) Rush of ALS WORLDWIDE if you have any questions about completing the survey.
Please forward the survey to others in your community. Thank you for your participation.
THE CLUSTER EFFECT: MAJOR PROJECT 2012-2013
Major clusters of ALS have surfaced throughout the world in specific geographical locations during the past 50 years. Some have ethnic, vocational and environmental aspects to them. We are currently analyzing nearly 60 of these clusters that may hold clues as to the origins of ALS. The first thorough analysis will be conducted and published by us based upon the results of an extensive survey of ALS patient and family members, an analysis currently underway of the more than 60 known clusters that exist.
ALS CLINIC AND HOSPITAL OVERVIEW: MAJOR PROJECT 2012
A “Best Practices Operational Guide for ALS Clinics” has been initiated with the reveiw and evaluation of Massachusetts General, Emory University, Duke University, Forbes Norris, Johns Hopkins University and Houston Neurological Institute. Other centers have been scheduled into mid-2012. The publication of this study, planned for release in Fall 2012, will be based upon the in-depth review and evaluation of twenty of the most effective ALS clinics in the United States and others internationally. The focus is to improve care for ALS patients and encourage broader clinical trial participation, so essential in the search for a cure.
JUSTICE FOR "21 CENTURY SNAKE OIL SALESMEN"
An indictment has just been unsealed charging Lawrence Stowe, Frank Morales and two accomplices with many counts of criminal behavior for luring ALS patients into their fraudulent stem cell practices. ALS WORLDWIDE was instrumental in helping to uncover these culprits through the CBS 60 Minutes documentary, "21 Century Snake Oil Salesmen" that first aired on April 18, 2010. Detailed information is available on Breaking News on this website.
MEDICAL ETHICS
A unique, compelling oversight on MEDICAL ETHICS was presented by Dr James Russell of the Lahey Clinic of Tufts University, Burlington, MA, during the recent ALS Clinical Research Learning Institute adjunct session to the 10th annual NEALS conference. Dr Russell's message is more relevant today than at any other time. As we all face the rigors of declining medical benefit payments, increased medical expenses and the complexities of merging new information with old problems of ALS, we urge a careful review of Dr Russell's excellent discussion.
ISRAEL:COMMITMENT TO ALS
The most recent ALSWW publication, ISRAEL: COMMITMENT TO ALS, is now available. First distributed at the 2011 World Stem Cell Summit in Pasadena, CA on October 3, it includes important information about Israel's ALS medical and research community and their extensive accomplishments on behalf of the ALS patient community. The publication can be viewed on this website at the link provided. Hard copies are also available upon request at Publications.
CURRENT ALS PHARMACEUTICAL CLINICAL TRIALS
ALS clinicians and researchers strongly believe that every eligible ALS patient should be part of a clinical trial that has a solid scientific basis and appropriate oversight. After a thorough investigation, ALSWW offers our top four recommendations. All are described in detail on this website.
CEFTRIAXONE - NEURALTUS - CYTOKINETICS -DEXPRAMIPEXOLE
FDA APPROVAL RECEIVED
NEURX DIAPHRAGM PACING SYSTEM FOR ALS
One of the most extraordinary medical devices for the AKS community has been approved. The NEURX Diaphragm Pacing System from Synapse Biomedical will now be available. The Diaphragm Pacing System, invented and pioneered by our friend and colleague, Dr. Ray Onders, enables ALS patients with mild to severe respiratory distress to breathe normally through a minimally invasive surgical implantation. More information is available by contacting Mary Jo Elmo by EMAIL or telephone: 216-844-8594.
KEEP UP THE FIGHT FOR STEM CELL RESEARCH
Join the Stem Cell Action Network and join the movement to advance government support for stem cell research. Your voice and support can make a difference.
"INDESTRUCTIBLE"
Plan a screening of "INDESTRUCTIBLE" in your community. With Spanish and French editions available, many more ALS patients and family members are promoting screenings. Each person who views "Indestructible" gains insight, awareness and hopefully commitment towards joining efforts to find a cure for ALS. Both 53 minute and two hour versions are available for screenings at ALS clinics, medical schools, universities and elsewhere. Screening information is available to help you arrange a screening at your facility.
ABOUT CARINGBRIDGE
CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier. CaringBridge is powered by generous donors.
CaringBridge websites offer a personal and private space to communicate and show support, saving time and emotional energy when health matters most. The websites are easy to create and use. Authors add health updates and photos to share their story while visitors leave messages of love, hope and compassion in the guestbook.
DID YOU ORDER YOUR COPY?
is now available at many ALS/MDA Clinics throughout the US and in Europe. If you would like a copy, and your ALS clinic doesn't have one, email PUBLICATIONS with your name and address and let the clinic director know more can be obtained free of charge..
SPANISH TRANSLATIONS NOW AVAILABLE
Because we now serve the ALS community in over 70 countries, many of them Spanish speaking societies, the need for our written materials to be available in Spanish has never been more important. Persons with ALS in Spain, Colombia, Argentina, Peru, Ecuador, Mexico, Honduras, Costa Rica, Chile, Uruguay, Venezuela, Puerto Rico, United States and other locales regularly request information about our efforts in their own language. The Methylcobalamin materials and "Indestructible" have both been translated into Spanish and are now available.
Para Nuestros Amigos Que Hablan Español
Como servimos la comunidad de ALS in mas de 70 países, muchos de ellos sociedades que hablan español, la necesidad de nuestros materiales escritos que sean disponibles en español nunca ha sido mas importante. Personas con ALS en España, Colombia, Argentina, Perú, Ecuador, México, Honduras, Costa Rica, Chile, Uruguay, Venezuela, Puerto Rico, Estados Unidos, y otras localidades regularmente piden información sobre nuestros esfuerzos en su propio idioma. Los materiales de Methylcobalamin han sido traducidas y están disponibles en la pagina de Internet. Otras traducciones seguirán.
La película documental “Indestructible” también esta disponible con subtítulos Españoles. Mándenos un email con su dirección de correo y pida por su copia de la película. Esperamos escuchar de usted.
Materiales de Methylcobalamin
Forma de Receta General
Perfil de Participante
Informacion de Paciente de Inyecciones Intramusculares
Reporte de Estado Basal
La película documental "Indestructible" también esta disponible con subtítulos Españoles. Mándenos un email con su dirección de correo y pida por su copia de la película. Esperamos escuchar de usted.
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