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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.

FOUNDERS AND ADVISORS

ALS Worldwide has evolved organically, conversationally, as part of the process of trying to combat this terrible disease. Good friends asked what would happen to the world of information and experience we’d gleaned from the many families we’d visited and patients we’d assisted. Would we write a book for posterity or would all the ideas eventually be lost? This past winter, we asked Ben what he thought about the creation of a not for profit corporation that would integrate the knowledge we’d assimilated. His enthusiastic response coupled with our belief that what we had learned had enormous value to others, propelled us to begin the task of assimilating the volumes of material that had accumulated through the past seven years.

Michael Schafer, a physician who has been so instrumental in helping us and many other patients in so many ways, agreed to join our efforts. Tom Basting, president emeritus of the Wisconsin Bar Association, provides legal expertise and oversight to this organization. Together, we’ve created ALSWORLDWIDE.ORG for the benefit of the ALS community.

FOUNDER, Co-Executive Director

Stephen Byer's commitment to ALS patients and their families strengthens with each day. He has become a support pillar for the ALS community through his dedication and devotion to making each day the best it can be, something Ben strived for through his last days. After a successful career in marketing and fine art, Steve has focused exclusively on the study and treatment of ALS for the past seven years.

Stephen's CV

Steve Byer and Dr.James Thomson, known as the father of the stem cell, are both quoted in "Why News" the online publication of University of Wisconsin in the March 19, 2009 edition which discusses the resurgence of effort in embryonic stem cell research since the start of the new presidential administration.”

http://whyfiles.org/299stemcell09/

In the October 9, 2008 issue of "Why Files" Dr. Thomson, Dr. Clive Svendsen, Professor of Anatomy and ALS researcher at the Waisman Institute in Madison and Steve and Barbara Byer are interviewed for an article entitled Stem Cells + Ten, following the 2008 World Stem Cell Summit held in Madison, Wisconsin.

http://whyfiles.org/288stemcell10/

FOUNDER, Co-Executive Director

Barbara Byer, Infant, Child and Family Specialist, offers both personal and professional experience and expertise to families struggling to support their ALS patients and maintain a sense of dignity and well being for themselves, their children and their relationships. She has developed a deep level of sensitivity supporting her son Ben as he searched for independence within the confines of dependency.

Barbara's CV

SCIENTIFIC ADVISOR

Professor Nicholas D. Mazarakis B.Sc., Ph.D., Chair of Gene Therapy and Head of Department of Gene Therapy, Division of Medicine, Imperial College London, St Mary’s Campus has joined ALS WORLDWIDE as Scientific Advisor to our Board of Directors. Professor Mazarakis has long been involved in gene therapy as applied to MND. Our association began in 2003 while consulting on ALS treatments and evolved into regular ongoing consultations. We are pleased to have him join our team and look forward to a long and mutually beneficial relationship.

Nicholas's CV

FOUNDER, Legal Director

Thomas Basting Sr. has served as President of the Wisconsin State Bar Association and on numerous professional ethics committees. His expertise and integrity throughout his extensive career reflects a high level of dedication to those who need a voice in government and in the public venue.

Thomas's CV

FOUNDER, Medical Director

Michael E. Schafer, M.D. is an accomplished Plastic and Reconstructive Surgeon who has, in recent years devoted much of his time and effort to the wellbeing of ALS patients. He has served as an interface between the medical community and the pharmaceutical industry and ALS patients in a constructive and knowledgeable fashion.

Michael's CV

SCIENTIFIC ADVISOR

We are happy to announce that Dr. Jorge E. Moreno-Cuevas, M.D., PhD., Assistant Professor at ITESM Escuela de Salud y Biotecnología, has joined the Scientific Advisors of ALS WORLDWIDE. Not only does Dr. Moreno-Cuevas have an impressive resume, but he is also one of the major innovators and researchers for the current stem cell therapy developed by Tec de Monterrey. His devotion and concern for each patient's well being is exemplary. Further, his support for our efforts at ALS WORLDWIDE infuses us with a greater sense of purpose and commitment. Dr. Jose Moreno-Cuevas's involvement provides the ALS community the benefit of his knowledge, expertise and oversight as we move forward in our pursuit of a cure for ALS.

Jorge's CV