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.
Sunday, September 30, 2007
Of Mice and Men
Since this is Sunday, I'll take a break from speechifying and let this YouTube video do the talking. I bet the audience would not be laughing if they were watching three people on the spinning rod instead of three mice. Here's another one about this type of experiment.
On another note, I found out as I was looking for additional YouTube videos about SCA that there is an experimental rock group called Ataxia. If a punk rock group can call themselves the Dead Kennedys, I guess anything is up of grabs.
On another note, I found out as I was looking for additional YouTube videos about SCA that there is an experimental rock group called Ataxia. If a punk rock group can call themselves the Dead Kennedys, I guess anything is up of grabs.
Thursday, September 20, 2007
International Ataxia Awareness Day
Next Tuesday, September 25, 2007, is International Ataxia Awareness Day. The purpose is to create awareness of this relatively rare disease. I am getting a head start in doing my part by posting to this blog in the hopes that you will click here to learn more about Ataxia and how you can help in this effort.
Please consider making a donation to the National Ataxia Foundation by clicking here. Your gift will help Richard and others suffering from this terrible disease through funding the research needed to find the cure. Thank you for your support.
In terms of Richard's progress, there's not much change. He has recently started to work at home with a personal trainer once a week on additional exercises to strengthen his muscles. Despite Richard's diligence in working out at home, at the Y and at his weekly Pilates sessions, he has found that his muscles are getting weaker. Moreover, his sleep has been poor lately due to night terrors. He'll probably ask Dr. Perlman if there's medication for the night disturbances.
Please consider making a donation to the National Ataxia Foundation by clicking here. Your gift will help Richard and others suffering from this terrible disease through funding the research needed to find the cure. Thank you for your support.
In terms of Richard's progress, there's not much change. He has recently started to work at home with a personal trainer once a week on additional exercises to strengthen his muscles. Despite Richard's diligence in working out at home, at the Y and at his weekly Pilates sessions, he has found that his muscles are getting weaker. Moreover, his sleep has been poor lately due to night terrors. He'll probably ask Dr. Perlman if there's medication for the night disturbances.
Saturday, August 18, 2007
An evening with Dr. Andrew Fire
We're back from Vancouver. It is good to be home. Having traveled quite a bit in the last three weeks, we've become more aware of how airports and airlines differ in accommodating people with special needs. Hong Kong, Burbank and San Jose airports are amongst those that are the friendliest with the best wheelchair attendants. Southwest Airlines deserve special mention for going the extra mile for disabled passengers. We've flown with Southwest more times than we can count and each time, they have been unfailingly helpful, courteous and unobtrusive, on top of that they also offer $49 fares to LA.
In contrast, at both JFK and Vancouver, our wheelchair attendants were no-shows while at SFO, we had to push Richard up a very steep ramp and then waited from another 20 minutes for the wheelchair attendant to appear. While generally it is possible to push Richard around most airports through security checks, departure gates and baggage claim, there are airports, JFK being the most notorious, where in order to get to the elevators to go down to baggage claim and transportation, one needs to go behind and into restricted areas. This is where the wheelchair attendant becomes vital since he/she has the proper i.d. or key to operate the elevator. Enough of my ranting ....
Richard and I recently heard Dr. Andrew Fire speak on his research on RNAi. Dr. Fire, together with Dr. Craig Mello, received the 2006 Nobel Prize for Physiology or Medicine for the discovery of RNA interference (RNAi). RNAi is a means to "silence" the messenger RNA (mRNA) from giving instructions to make a certain protein. In the case of Polyglutamine Diseases, (including Huntington's, SCAs 1, 2, 3, 6, 7 & 16) RNAi therapy can potentially be used to stop the mutant gene from being expressed. As promising as this breakthrough discovery is, Dr. Fire cautioned that it would take many years before RNAi therapy can become a practical reality. He said that the human physiology is much more complex than that of the C. elegens, a nematode worm, which was his research subject in the RNAi experiment.
You can find the link to his Nobel lecture of RNAi here. Although we probably understood less than half of the highly technical material that Dr. Fire presented, his passion and enthusiasm for the subject matter is easy to see.
In contrast, at both JFK and Vancouver, our wheelchair attendants were no-shows while at SFO, we had to push Richard up a very steep ramp and then waited from another 20 minutes for the wheelchair attendant to appear. While generally it is possible to push Richard around most airports through security checks, departure gates and baggage claim, there are airports, JFK being the most notorious, where in order to get to the elevators to go down to baggage claim and transportation, one needs to go behind and into restricted areas. This is where the wheelchair attendant becomes vital since he/she has the proper i.d. or key to operate the elevator. Enough of my ranting ....
Richard and I recently heard Dr. Andrew Fire speak on his research on RNAi. Dr. Fire, together with Dr. Craig Mello, received the 2006 Nobel Prize for Physiology or Medicine for the discovery of RNA interference (RNAi). RNAi is a means to "silence" the messenger RNA (mRNA) from giving instructions to make a certain protein. In the case of Polyglutamine Diseases, (including Huntington's, SCAs 1, 2, 3, 6, 7 & 16) RNAi therapy can potentially be used to stop the mutant gene from being expressed. As promising as this breakthrough discovery is, Dr. Fire cautioned that it would take many years before RNAi therapy can become a practical reality. He said that the human physiology is much more complex than that of the C. elegens, a nematode worm, which was his research subject in the RNAi experiment.
You can find the link to his Nobel lecture of RNAi here. Although we probably understood less than half of the highly technical material that Dr. Fire presented, his passion and enthusiasm for the subject matter is easy to see.
Thursday, August 9, 2007
Persona non grata
It's official --- the pointer to our blog has been removed from the stemcellschina.com website. Thanks to our friend Nick who brought this to our attention.
Friday, July 20, 2007
An apology
I want to apologize to the ex-Nanshan patients to whom I've e-mailed requesting their opinion on the last post concerning ethics. In hindsight, I was most insensitive and inconsiderate in putting them in an awkward and no-win situation by asking them to either support my view or Mr. Hakim's. Mea maxima culpa.
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