ALS Worldwide in 2010
Too many weeks have passed since our last letter to you, but our news is encouraging. After the last decade of very little activity, it appears that ALS research is once again moving forward with vigor. We hope 2010 will begin a new era of more than symptom relief but rather, a true understanding of ALS, its causes and a potential cure.
At this time, we are particularly impressed with the Phase II/Phase III clinical trials of the following pharmaceutical and biotech companies, whose efforts we will be reporting on individually in following ALSWW newsletters: Knopp Neurosciences (US), Insmed (US), Mitsubishi Tanabe (Japan), NeuroNova/Genentech (Sweden), and Teva Pharmaceuticals (Israel).
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STEM CELL RESEARCH
ALSWW is very supportive of all stem cell research throughout the world. As such, several upcoming stem cell conferences being held in 2010 can be reviewed at Conferences. Although we and our colleagues will try to be at as many of the conferences as we possibly can, we urge that you give serious consideration to attending the World Stem Cell Summit being held this year in Detroit on October 4-6, 2010. We have been able to secure very favorable rates for ALS patients and their caregivers and we would enjoy seeing you there. Last year's World Stem Cell Summit was attended by quite number of persons with ALS from all over the world and it was an extremely worthwhile and informative event.
************************************************************ NIGHT - A devastatingly beautiful and insightful essay
Tony Judt is a well known historian, author, New York University professor, frequent contributor to the New York Review of Books and person with ALS. We're pleased to re-publish Night, his most insightful and moving essay first published in January 2010 that captures the essence of the devastation of this disease in graphic detail.
". . . What is distinctive about ALS--the least common of this family of neuro-muscular illnesses--is firstly that there is no loss of sensation (a mixed blessing) and secondly that there is no pain. In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one's own deterioration."
Read the complete essay NIGHT, the first of a series by Tony Judt
********************************************************************************** OUR APPRECIATION
After Ben's ALS diagnosis, we felt the urgency at our backs, the terror and frustration of having nowhere to turn for answers or direction, no one who could offer consolation or hope. The experience was like sinking in quicksand with no one throwing a rope to hold onto.
Today, ALSWW is that rope for many. We met with a woman recently diagnosed, retired from a wonderful career, widowed several years ago. As the initial fearful expression on her face relaxed, we realized we'd brought her a level of comfort just by giving her the awareness that we were vigilant, that she would know when a viable therapy surfaced, that she could find useful information on the website. This has happened countelss times in the past, but each new occurance causes us to realize that our role as patient advocates has become incredibly meaningful to us and very comforting to those in great need.
In a sense, ALSWW holds the anxiety for many. We may not
 have the answer or the cure, but we understand what is needed in a way that few outsiders understand. Neither the doctors nor neuroscientists, no matter how devoted, can truly commiserate with patient families at this level. It is with deep appreciation and concern that we continue this important work that provides a deeper meaning to our lives than either of us ever thought possible.
We also bring you greetings from our colleagues and co-directors of ALSWW. Drs. Michael Schafer, Nicholas Mazarakis and Jorge Moreno and Thomas Basting, Esq. are very much "on the scene" at all times and contribute invaluable knowledge and experience to our collective efforts.
Thank you for your trust in us.
Barb and Steve Byer
February 5, 2010
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