The Iplex Saga
Many want to know what's happening with Iplex. How are the ALS WORLDWIDEpatients who have access to this medication doing, is it ever going to be released to others and is it still being distributed in Europe? There is, at this time, no indication that the numbers of patients who currently have access to Iplex will be expanded or continued past a total period of 24 months as was stated in Insmed's last press release. Whereas we wish we knew more, we have very little information to release. Many patients we monitor have experienced a range of improvements including reductions in choking, greater ease with chewing and swallowing, improved speech and respiration, and some increased limb strength. What we do know is that any gains experienced can only be maintained while Iplex continues to be used. Greater details will be released on or after November 30, 2009, by which time a report will have been submitted to both Insmed and the FDA.
2009 World Stem Cell Summit
Presented by Genetics Policy Institute, the Summit took place September 21-23 at the Baltimore Convention Center. More than 2500 attendees participated, attending symposia ranging in topics from Regulatory and Reimbursement Strategies to International Perspectives to Stem Cells and Disease to Regenerative Medicine for Wounded Soldiers and Civilians. Steve Byer facilitated two round table discussions on Global Health Care Recommendations for Self-Management. Steve's highlights from his experience are available in Breaking News, where a detailed discussion about ways individuals can evaluate stem cell opportunities offered globally can be evaluated.
Tec de Monterrey
Details of MRI Tractography results will be presented at the Radiological Society of North America Annual Conference in November 2009 in Chicago. The peer-reviewed clinical test study (Phase II) will be released in published form perhaps as early as December. Several international ALS patients have participated in the ongoing Phase III clinical trial. Many more are scheduled between now and the end of the year. As international awareness grows and results become available, we look forward to providing our readership informative information from both individual patients and scientific publications.
Supplements
Carnation Instant Breakfast Drink (VHC) offers excellent taste and very high caloric value. Details can be found in the Diet section on this website.
We always welcome your comments and suggestions.
Barb and Steve Byer
October 6, 2009
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