Important New Developments at ALS WORLDWIDE
These early days of ALS WORLDWIDE are rigorous, demanding and worthwhile. Patients seek support and advice, treatment opportunities are explored and information about the needs of the ALS community are released to the media.
We are pleased to announce that the Internal Revenue Service, as of May 8, 2009, has confirmed that ALS WORLDWIDE has received its 501c3 tax exempt status as a public charity. All donations retroactive to November 1, 2008 and hereafter are tax deductible to the fullest extent allowable by law.
Dr. Michael E. Schafer, Medical Director of ALS WORLDWIDE, is the Principal Investigator for a small group of ALS patients, approved by the FDA, to begin treatment with Iplex. Supported by both Barbara and Stephen Byer, the required oversight by Alpha Independent Review Board was obtained, patients received their initial supply of medication from Insmed and the small group study began in late April. Continuing examinations and evaluations will, we hope, demonstrate positive results.
Professor Nicholas D. Mazarakis 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 is known as one of the world's foremost experts in gene therapy as applied to ALS and other forms of motor neuron disease. Our association began in 2003 while consulting together on ALS treatments and evolved into regular ongoing discussions and co-review of potential treatments. We are pleased to have him join our team and look forward to a long and mutually beneficial relationship on behalf of the ALS community.
ALS patients will begin travel in June to Hospital San Jose Tecnologico de Monterrey in Mexico to receive stem cell treatment. This procedure involves the extraction of peripheral blood through apheresis, laboratory cultivation of blood to extract purified autologous CD133 (+) stem cells from each patient and the reinsertion of the purified and multiplied CD133 stem cells into both frontal cortexes of the brain while under local anesthetic in sterile operating theatre conditions. A two year clinical test study produced encouraging results that account for this recent expansion of effort. Stephen Byer and Michael Schafer met with the Deans of the School of Medicine and the Health Sciences Division, Medical Director of Hospital San Jose, Chief of Neurosurgery, Chairman of Stem Cell Therapy, Chairman of ALS Stem Cell Transplant program and Chief of Neuroradiology and International Patient Director in late March. At that time, they were invited to serve on the hospital Ethics Committee and both have since agreed to serve in a voluntary capacity.
IN THE SPOTLIGHT hosts a video by Phil Carlo, well known author of best sellers about infamous Mafiosi. He is currently writing a new book about life since his 2006 diagnosis of ALS and shares his experiences as he continues life as a prolific, successful writer amid the difficulties of ALS.
In the six months since the creation of ALS WORLDWIDE, much has been accomplished but a far greater effort lies ahead. Please support our efforts by visiting our website frequently and making a donation today. Until recently, our efforts have been largely dependent upon personal funds. Any contribution, large or small, will assist our research efforts, patient advocacy and support and community activism. Please join the ALS WORLDWIDE family now.
Thank you,
Barb and Steve
May 14, 2009
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