Stem Cells, Iplex and More
We are back at the office again after a one month travel experience. We were able to visit with seven ALS patients currently using Iplex under the ALS WORLDWIDE supervised IND program and several other ALS families throughout the East and Mid-Atlantic states. We are pleased to report that none of those on Iplex are having any negative or adverse side effects. Most have experienced some reduction of symptoms which is what we hoped would occur. Eating a meal without choking can feel like a gift from the heavens as can an improvement in speech recognition by others. The one notable side effect - dry mouth - is a welcome benefit for most. We're getting close to a four-month evaluation period and hope to have a more definitive report soon. As many of you know, however, every ALS patient has individualized responses to both the ravages of the disease and any of the suggested medications. We can't expect a "one size fits all" solution to symptom relief.
Monterrey was, once again, an extremely busy week (August 4-11). While we were there, the sixth and seventh US patients were also there to receive the Tec de Monterrey stem cell protocol. Afterwards, one patient described the procedure as "a piece of cake. No biggy." She and her family even had time to visit several of the magnificent Monterrey sights. Her first-hand report is due any day and we'll publish it on the website section known as In The Spotlight. The other stem cell patient is also back home after an easy surgery. Both are now working on the physio, speech, respiration and other therapies that are so important for the effectiveness of the protocol.
We, on the other hand, spent most of our time working with the administrative staff to help translate documents, refine communication between Tec de Monterrey clinical staff and ALS patients and to support Tec's efforts to expand their research protocols. Assisting Tec in their further entry into the international community, reaching ALS patient families in both developed and underdeveloped countries and alerting other research institutions to their impressive accomplishments is collectively a challenging endeavor. We are honored and gratified to be assisting in whatever way we can to help accurately inform the ALS community of the impressive strides being accomplished at Tec de Monterrey.
While visiting patients and organizations this summer has been an extremely busy travel period for us and Dr Michael Schafer, ALS WW Medical Director, we are nonetheless hoping to be at three major conferences and symposia this Fall: The World Stem Cell Summit in Baltimore, the ALS/MND International Symposium in Berlin and the Radiological Society of North America Assembly in Chicago at which Tec de Monterrey scientists will present the results of their initial pilot study.
Thank you, one and all, for the contributions we have received since our formal inception as ALS WORLDWIDE, a non-profit organization, in November 2008. We appreciate your confidence and support so that we can continue this meaningful and important work. Our efforts have expanded tenfold since we began and we need your financial support now more than ever. Please Donate Today. Be assured that every dollar contributed is spent on pursuing the goals and aspirations of the ALS community.
You can also help by forwarding this email to family, friends and neighbors to increase our mailing list substantially. Ask them to add their names to the list, to read the information on our website and to become informed about ALS. Public awareness can become a most powerful ally for the ALS community.
In our next Newsletter, we expect to bring you up-to-date about one additional procedure and one medication that have demonstrated some apparent benefit in symptom minimization. We look forward to sharing this important information with you soon.
Thank you,
Barb and Steve Byer
August 18, 2009
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