Past, Present and Future Events
Spring is here, bringing with it a sense of rebirth and new energy. Please visit our website, ALSWORLDWIDE for more in-depth information about ALS and our organizaiton. Here are just a few of the topics we discuss online in greater detail.
Iplex Study
The results of the Iplex Investigational New Drug Study conducted on a small group of ALS patients during the period May-November, 2009 can be read in its entirety along with the Statistical Summation. Further phases of the study continue at this time. The study was conducted under the direction of Dr Michael Schafer, Medical Director of ALS WORLDWIDE, provided oversight by Alpha IRB and presented to the Food and Drug Administration and Insmed Incorporated, the manufacturer of mecasermin rinfabate (Iplex).
2010 World Stem Cell Summit We continue to be more impressed than ever with the efforts by Genetics Policy Institute, the founders and organizers of the annual World Stem Cell Summit, to integrate state-of-the-art stem cell science with patient communities, neurological institutions and other medical specialties. This year's Summit on October 4-6, 2010 in Detroit, MI, is co-hosted by University of Michigan, Michigan State University and Wayne State University, among others. ALSWW is obtaining special rates for those with ALS and caregivers. Plan to attend this important event at the Detroit Marriott Renaissance Center.
Ill Fares the Land by Tony Judt
In January 2010, we were pleased to reprint, with the personal authorization of Tony Judt (author, scholar, historian, humanist and person with ALS), his essay "Night." We are equally pleased to reprint this excellent review of Tony Judt's new book Ill Fares the Land written by Tim Rutten of the Los Angeles Times.
Judt argues that "Something is profoundly wrong with the way we live today. For 30 years we have made a virtue out of the pursuit of material self-interest. . . . The materialistic and selfish quality of contemporary life is not inherent in the human condition." We encourage you to read it for its brilliance and ability to alert us all to our capacity to do more with our limited time than we may have thought possible.
Helpful Suggestions with iPhone Apps
Thanks to a Florida family for the following information. iPhone Apps provide communication assistance and exercises. The first is Small Talk - Dysphagia, (difficulty eating or swallowing) which provides a vocabulary of pictures and icons that talk in a natural human voice. The second, Small Talk - Oral Motor Exercises , offers videos of strengthening exercises for people with weak mouth, tongue, and lip muscles and/or poor oral coordination. There is a one-time charge of $19.95 for each of these. The third Small Talk - Aphasia (inability to speak) is free and provides a vocabulary of pictures and videos that talk in a natural human voice.
Whole-genome Sequencing
A study presented in The New England Journal of Medicine (March 10, 2010) defines the new-found ability to use whole-genome sequencing for the purpose of clearly identifying disease (in this case, Charcot-Marie-Tooth Neuropathy, an hereditary disease that is a remarkably close variant to ALS) early in its formation, thereby leading to more rapid diagnosis and treatment. Whole-genome sequencing is very applicable to the detection of ALS for those who may have the familial type (FALS) and should be discussed with your medical practitioner if you feel you may show early signs of onset.
The Future
Thank you to all who have generously supported our efforts this past year, both financially and spiritually. We are appreciative of your good wishes and encouragement as we continue our work which began with Ben's diagnosis in 2002 and will continue until a cure is found. Our goals have expanded and so has the need for greater financial support to pay for the investigation and pursuit of experimental drugs, additional staff, supplies, travel expenses to visit patients in the US and abroad, the costs of maintaining the Iplex program, attendance at symposia, meetings with scientists, researchers and medical professionals, development of educational materials and much more. ALSWW is a 501c3 not-for-profit organization that relies totally on contributions and donations. Support is vital to our ongoing efforts on behalf of the ALS community worldwide. Please DONATE what is affordable for you. Encourage friends, family and businesses to contribute today. All donations are tax deductible to the extent allowed by law.
Thank you for your ongoing support,
Barb and Steve Byer
March 23, 2010
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