Saturday, October 20, 2007
News from Down Under
We were alerted to an article in 6minutes.com titled "Hard sell on Chinese stem cell cures" that commented on my post about ethics.
Friday, October 19, 2007
Visit to Southland
We've just returned from visiting Los Angeles and Irvine this past week. Coincidentally, it is USC's Trojan Parents' Weekend so we got to spend some time with Andrea.
It has been six months since we've returned from China and time to see Dr. Perlman at UCLA for another evaluation. We have been told by Beike that we should be seeing some improvement (if any) by six months, if not before. On this visit, Richard lost a few points on his SARA score compared to his May 2007 exam. His speech, hand-eye coordination and foot-shin test were a little worse. However, Dr. Perlman remarked that Richard looked very alert and healthy. His energy level and stamina remain good. Furthermore, Dr. Perlman shared with us news that there are at least two exciting medical trials for Ataxians that will be upcoming in 2008. It is therefore important for SCA-ers to get registered with the Cooperative Ataxia Registry in order to become part of the database of patients. We are eagerly waiting for further news in the coming year.
While at Dr. Perlman's waiting room, we saw Mike and Jody from the Northern California Ataxia Support Group. Like us, they were taking advantage of the fact that ACARM is in Irvine this year to piggyback their medical visit with the conference. Speaking of ACARM (All California Ataxia Research Meeting ) 2007, the topics were germane and informative and the speakers lucid and knowledgeable. The audience was smaller than expected but those who came were very dedicated. There were quite a few who had traveled far. One person came all the way from the UK. Two of the non-Californian attendees were Kim and Sally Poor from Arizona. We have never met the Poors although we were familiar with Kim's blog and his experience in China which helped convince us to give stem cell therapy a try. It was good to finally meet them in person.
It has been six months since we've returned from China and time to see Dr. Perlman at UCLA for another evaluation. We have been told by Beike that we should be seeing some improvement (if any) by six months, if not before. On this visit, Richard lost a few points on his SARA score compared to his May 2007 exam. His speech, hand-eye coordination and foot-shin test were a little worse. However, Dr. Perlman remarked that Richard looked very alert and healthy. His energy level and stamina remain good. Furthermore, Dr. Perlman shared with us news that there are at least two exciting medical trials for Ataxians that will be upcoming in 2008. It is therefore important for SCA-ers to get registered with the Cooperative Ataxia Registry in order to become part of the database of patients. We are eagerly waiting for further news in the coming year.
While at Dr. Perlman's waiting room, we saw Mike and Jody from the Northern California Ataxia Support Group. Like us, they were taking advantage of the fact that ACARM is in Irvine this year to piggyback their medical visit with the conference. Speaking of ACARM (All California Ataxia Research Meeting ) 2007, the topics were germane and informative and the speakers lucid and knowledgeable. The audience was smaller than expected but those who came were very dedicated. There were quite a few who had traveled far. One person came all the way from the UK. Two of the non-Californian attendees were Kim and Sally Poor from Arizona. We have never met the Poors although we were familiar with Kim's blog and his experience in China which helped convince us to give stem cell therapy a try. It was good to finally meet them in person.
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