2008 has been a momentous year so far, filled with both memorable celebrations and challenges that we'd rather do without.
Richard and I celebrated our 25th wedding anniversary and half century birthdays. We also reunited with family members who we have not seen for some time and participated in Richard's mother's 80th birthday bash in New York.
However, our mothers' health problems continue to plague them. Richard also had his share of health issues in the past few months. There were falls and accidents that resulted in trips to the emergency room. The numerous stitches on his face has given him a "tough guy" aura.
Looking beyond our immediate family, we now have a charismatic African-American president-elect who is poised to bring much needed change to the nation. However, the economy has plunged into unprecedented chaos that threatens the livelihood of every global citizen.
It is hard to remain positive in these difficult times. I take comfort in Nietzche's quote of "that does not kill us makes us stronger".
Sunday, November 23, 2008
Sunday, October 12, 2008
More from ACARM7
We saw Dr. Perlman recently when Richard had his semi annual checkup with her at UCLA. I asked Dr. Perlman for a copy of her ACARM7 talk since I was only able to summarize a small portion of her presentation in my last post. Aside from news of the latest trials for HD and SCAs, it has pointers and information germane to the SCAs.
Mazel Tov to Dr. Perlman who was presented with the prestigious Sherman M. Mellinkoff Faculty Award this past May. The award is considered the highest faculty distinction at the UCLA Medical School.
Mazel Tov to Dr. Perlman who was presented with the prestigious Sherman M. Mellinkoff Faculty Award this past May. The award is considered the highest faculty distinction at the UCLA Medical School.
Sunday, September 14, 2008
Notes from ACARM7
We just came back from the 7th All California Ataxia Research Meeting (ACARM7) held at the San Jose Doubletree Hotel today. This year's meeting was almost canceled due to budget issues stemming from lower than expected attendance. At the eleventh hour, it was saved by a generous anonymous underwriter. The other unsung heroes are Mike Fernandes, the organizer of the venue, the doctors and presenters of the program and the numerous volunteers who helped to bring the event into fruition.
The first speaker of the morning was Dr. Richard Ivry who talked about "The Effect of Ataxia on Cognition". Specifically, he spoke about Dr. Jeremy Schmahmann's work on the "Cerebellar Cognitive Affective Syndrome". Dr. Ivry concluded that ataxics have difficulty with non-motor tasks but their cognitive problems might be secondary to their motor problems.
Dr. Susan Perlman was next. Her topic was "An Update of Clinical Trials for the SCAs and HD". According to Dr. Perlman, if one were to do a web search on the key words "clinical trials for Ataxia", one would find 42 trial listings of which only 35 actually dealt with Ataxia. 13 of these trials have been completed, 5 are active but no longer recruiting for subjects while the remaining 17 are still recruiting. Of these 17, one is available in California ---- Phase III Idebenone and Extension Study for FA. (Friedreich's Ataxia) Also, the pilot study of Lithium for patients with SCA1 has now started in Maryland and is still recruiting.
Dr. Lisa Ellerby followed Dr. Perlman with "Target Validation in HD: siRNA screens in HD cell culture models". After conducting studies to screen through possible druggable targets using siRNA technology, her team has found that HDAC4 inhibitors to be effective against Huntington's Disease.
Dr. Elizabeth Thomas was the last speaker of the morning. She further elaborated on the HDACs with "Novel Histone Deacetylase Inhibitors as Therapeutics for Triplet Repeat Disorders". While conventional HDAC inhibitors (used in treating cancers) are very toxic, novel HDAC inhibitors have been shown in (non-human) trials to be low in toxicity. Experiments on transgenic mice using HDACi4b have shown it to be therapeutic and non toxic for triplet repeat disorders such as HD, SCA1, 2 and 3. Repligen Corp. in Waltham, Massachusetts has licensed HDAC inhibitors in development.
The three presenters in the afternoon were Richard Devylder, (Emergency Disasters for the Disabled) Colleen Campbell (Falling Prevention) and Arya Pathria. (Laughing: Laughter Yoga Workshop)
The first speaker of the morning was Dr. Richard Ivry who talked about "The Effect of Ataxia on Cognition". Specifically, he spoke about Dr. Jeremy Schmahmann's work on the "Cerebellar Cognitive Affective Syndrome". Dr. Ivry concluded that ataxics have difficulty with non-motor tasks but their cognitive problems might be secondary to their motor problems.
Dr. Susan Perlman was next. Her topic was "An Update of Clinical Trials for the SCAs and HD". According to Dr. Perlman, if one were to do a web search on the key words "clinical trials for Ataxia", one would find 42 trial listings of which only 35 actually dealt with Ataxia. 13 of these trials have been completed, 5 are active but no longer recruiting for subjects while the remaining 17 are still recruiting. Of these 17, one is available in California ---- Phase III Idebenone and Extension Study for FA. (Friedreich's Ataxia) Also, the pilot study of Lithium for patients with SCA1 has now started in Maryland and is still recruiting.
Dr. Lisa Ellerby followed Dr. Perlman with "Target Validation in HD: siRNA screens in HD cell culture models". After conducting studies to screen through possible druggable targets using siRNA technology, her team has found that HDAC4 inhibitors to be effective against Huntington's Disease.
Dr. Elizabeth Thomas was the last speaker of the morning. She further elaborated on the HDACs with "Novel Histone Deacetylase Inhibitors as Therapeutics for Triplet Repeat Disorders". While conventional HDAC inhibitors (used in treating cancers) are very toxic, novel HDAC inhibitors have been shown in (non-human) trials to be low in toxicity. Experiments on transgenic mice using HDACi4b have shown it to be therapeutic and non toxic for triplet repeat disorders such as HD, SCA1, 2 and 3. Repligen Corp. in Waltham, Massachusetts has licensed HDAC inhibitors in development.
The three presenters in the afternoon were Richard Devylder, (Emergency Disasters for the Disabled) Colleen Campbell (Falling Prevention) and Arya Pathria. (Laughing: Laughter Yoga Workshop)
Friday, August 1, 2008
Finding your inner Tigger
Just in case you missed "The Last Lecture", I highly recommend it on those "why me" days.
Wednesday, July 9, 2008
All California Ataxia Research Meeting 2008 (ACARM7)
ACARM7 will be held on Sunday, September 14, 2008 at the Doubletree Hotel by the San Jose Airport. This year's meeting will concentrate on the SCAs. Richard and I are looking forward to the event. As usual, kudos to Mike Fernandes for putting this together.
Sad news
Our friend and fellow Nanshan patient, Nadia, succumbed to ALS in late June. We will miss her terribly but we take comfort in our fond memories of the time that we spent with her in Shenzhen last year. Our deepest sympathy to Fabio and his family.
Please help in finding a cure for this terrible disease by donating to the ALS Association.
Please help in finding a cure for this terrible disease by donating to the ALS Association.
Sunday, May 25, 2008
Point/Counterpoint
Remember the NPR article about China stem cells that Richard mentioned in this post? Here's Jake Young's opinion of the article from his blog, Pure Pedantry. He also briefly mentioned and quoted from the Jane Qiu's Lancet Neurology article.
Thursday, May 22, 2008
The Lancet Neurology February 2008
Freelance journalist and neuroscientist, Jane Qiu, interviewed Richard last year about his experience at Nanshan. Her article, "Injection of hope through China's stem cell therapies", was published in the February 2008 issue of the Lancet Neurology.
Thank you, Jane, for making your article available to us.
Download the Lancet article through here
Thank you, Jane, for making your article available to us.
Download the Lancet article through here
Thursday, May 15, 2008
A Spoonful of Sugar
We just returned from a visit with Dr. Perlman last Friday at UCLA. Richard's SARA score stayed pretty much the same which is encouraging.
Dr. Perlman wanted Richard to start taking a new supplement called Trehalose which is a sugar derivative. Trehalose has been shown to help with Huntington's Disease in preventing the clumping of proteins in the cells. One of the hallmarks of MJD is also clumping of the proteins so Trehalose should theoretically help stop this. Moreover, Trehalose is fairly safe with few side effects and is very cost-effective and readily available.
Here's a link to the website of Neurocoat which is a 100% Trehalose supplement. This article has details on the recommended dosage. We have already placed our order.
Dr. Perlman wanted Richard to start taking a new supplement called Trehalose which is a sugar derivative. Trehalose has been shown to help with Huntington's Disease in preventing the clumping of proteins in the cells. One of the hallmarks of MJD is also clumping of the proteins so Trehalose should theoretically help stop this. Moreover, Trehalose is fairly safe with few side effects and is very cost-effective and readily available.
Here's a link to the website of Neurocoat which is a 100% Trehalose supplement. This article has details on the recommended dosage. We have already placed our order.
Sunday, April 13, 2008
A 1,000 Words
I recently found this photo at the Ride Ataxia website. Kyle Bryant, an extraordinary young man who has Friedreich's Ataxia, is raising money for research and awareness of FA through this website. Please give him your generous support.
Here's a "Where's Waldo" moment. Can you spot Richard in the photo above? It was taken last November during the ACARM6 in Orange County. Kyle came by and he took a group photo with the "Ride Ataxia" banner. Give up? That's Mike Fernandes (in dark blue) at the left end of the banner and Richard (in a yellow shirt with a blue jacket) at the right end of the banner. The Poors (Sally and Kim) are at the extreme right in the back row. I am to the immediate left of Sally and Dr. Perlman (only partially visible) is to my left.
Friday, April 11, 2008
Vegas redux
On this last trip to Vegas, we decided to tack on a few days before and after the NAF Meeting as part of our 25th wedding anniversary celebration. I've always been fascinated with Las Vegas ever since my first visit there 34 years ago. Since then, I've been back many times, courtesy of my late father who was a gambling aficionado.
Armed with the wisdom and advice of Ricardo Rodriguez, a frequent visitor to Las Vegas who has first-hand knowledge of the ADA-compliant hotel rooms of the city, we split our visit at three different hotels, the Bellagio, Flamingo and Wynn. The result was somewhat of a revelation.
After flying into McCarran, we marvelled at the ease, accessibility and friendliness of the airport facilities and staff. It was a breeze to hail a cab to get to the Bellagio Hotel. I guess the fact that Richard could transfer easily from his wheelchair to the cab made a big difference.
We booked our room at the Bellagio through David Ourisman, a travel agent who is affiliated with Virtuoso, and received extra perks during our stay there. These included continental breakfast for two each morning and complimentary room upgrade when available. However, the nicest "freebie" was the $85 dining (lunch only) credit at Sensi, an Asian-fusion restaurant located inside the hotel. We had already planned on eating at this restaurant so this gift was more than welcomed.
Our room at the Bellagio was very spacious and elegantly appointed and had two Queen size beds. It was located in the new Spa Tower. The view (parking lot) was nothing to write home about but we were willing to settle for a no-view room on a low floor for immediate occupancy since we checked in early and Richard was tired and wanted to nap. The bathroom had a good layout and an enclosed roll-in shower with a fold-down bench. The water pressure from the hand-held shower was very good. The only complaint is that the glass door to the shower was very heavy and awkward to operate for someone in a wheelchair. Ricardo mentioned that Bellagio also has rooms with Hoyer lifts for folks who need them.
We moved across the strip to the Flamingo Hotel in time for the NAF meeting. We got a newly remodeled Austin Power-ish "GO" room with a platform King bed, roll-in shower and an unbelievable view of the famed Bellagio fountains. The room was smaller than our room at the Bellagio but the roll-in shower was the best designed ADA shower in a hotel that we've ever encountered. Instead of the usual heavy glass door, this one had a shower curtain that was effective enough to keep the floor in the rest of the bathroom dry. The digital TV embedded into the bathroom mirror was another nice touch.
After the NAF meeting wrapped up on Sunday, we spent one day and night at the Wynn hotel. The plushiest of the three hotels, it also had the prices to match. The palatial room had two Queen beds and an enormous bathroom that echoed with our footsteps. The bathroom had both a roll-in shower and a bathtub with jets. It also had two sinks and a mini TV built into the wall. Unlike the Bellagio, the Wynn loaned Richard a wheelchair without requiring a credit card imprint from us. We were also informed by Cyndi Segroves, one of the speakers at the NAF workshops, who stayed at the Wynn during the meeting that the Wynn also has rooms with Hoyer lifts.
Overall, we were very impressed with the three ADA rooms that we stayed at during the trip. Any one of the three would more than meet our needs. The bottom line is then a matter of cost. Here's the break down:
Bellagio: We paid $206 before taxes per night for 2 nights. This was the "Virtuoso" rate during that period. However, we received "bonuses" worth $141. ($28 credit per day for breakfast for 2 days and a $85 dining credit at Sensi) Subtracting this amount from the room rate, it came to around $136 per night, excluding taxes.
Flamingo: We originally reserved a standard room at the NAF group rate of $124 per night before taxes. However, we opted to upgrade to the "GO" rooms at the last minute when we were informed by the check-in clerk that some of the "GO" rooms were ADA compliant. We were previously told when we called up to reserve the room that none of the "GO" rooms were handicap accessible. The upgrade cost an extra $44 per night, making the grand total $168.
Wynn: I booked the room directly from the hotel at a special promotional rate of $199 per night before taxes. This included a $100 resort credit that is good for dining at the hotel's restaurants, shows or spa expenses. Since we only stayed one night and had already planned to dine at the hotel, our out-of-pocket for the room was $99.
The moral of the story is that 4 star properties are more affordable than you think. It really depends on what you are looking for or what services you value. And then, there are the intangibles. The Flamingo is young and boisterous with girls and boys with spiky blue hair that woke us up three in the morning with their drunk hollering and running up and down the hallway on our floor.
This post is by no means an endorsement for any of the three hotels mentioned. I am merely sharing our experiences and observations on this trip with you. If you should happen to use the above information as a reference, please beware, as Richard is fond of saying, "your mileage may vary".
Armed with the wisdom and advice of Ricardo Rodriguez, a frequent visitor to Las Vegas who has first-hand knowledge of the ADA-compliant hotel rooms of the city, we split our visit at three different hotels, the Bellagio, Flamingo and Wynn. The result was somewhat of a revelation.
After flying into McCarran, we marvelled at the ease, accessibility and friendliness of the airport facilities and staff. It was a breeze to hail a cab to get to the Bellagio Hotel. I guess the fact that Richard could transfer easily from his wheelchair to the cab made a big difference.
We booked our room at the Bellagio through David Ourisman, a travel agent who is affiliated with Virtuoso, and received extra perks during our stay there. These included continental breakfast for two each morning and complimentary room upgrade when available. However, the nicest "freebie" was the $85 dining (lunch only) credit at Sensi, an Asian-fusion restaurant located inside the hotel. We had already planned on eating at this restaurant so this gift was more than welcomed.
Our room at the Bellagio was very spacious and elegantly appointed and had two Queen size beds. It was located in the new Spa Tower. The view (parking lot) was nothing to write home about but we were willing to settle for a no-view room on a low floor for immediate occupancy since we checked in early and Richard was tired and wanted to nap. The bathroom had a good layout and an enclosed roll-in shower with a fold-down bench. The water pressure from the hand-held shower was very good. The only complaint is that the glass door to the shower was very heavy and awkward to operate for someone in a wheelchair. Ricardo mentioned that Bellagio also has rooms with Hoyer lifts for folks who need them.
We moved across the strip to the Flamingo Hotel in time for the NAF meeting. We got a newly remodeled Austin Power-ish "GO" room with a platform King bed, roll-in shower and an unbelievable view of the famed Bellagio fountains. The room was smaller than our room at the Bellagio but the roll-in shower was the best designed ADA shower in a hotel that we've ever encountered. Instead of the usual heavy glass door, this one had a shower curtain that was effective enough to keep the floor in the rest of the bathroom dry. The digital TV embedded into the bathroom mirror was another nice touch.
After the NAF meeting wrapped up on Sunday, we spent one day and night at the Wynn hotel. The plushiest of the three hotels, it also had the prices to match. The palatial room had two Queen beds and an enormous bathroom that echoed with our footsteps. The bathroom had both a roll-in shower and a bathtub with jets. It also had two sinks and a mini TV built into the wall. Unlike the Bellagio, the Wynn loaned Richard a wheelchair without requiring a credit card imprint from us. We were also informed by Cyndi Segroves, one of the speakers at the NAF workshops, who stayed at the Wynn during the meeting that the Wynn also has rooms with Hoyer lifts.
Overall, we were very impressed with the three ADA rooms that we stayed at during the trip. Any one of the three would more than meet our needs. The bottom line is then a matter of cost. Here's the break down:
Bellagio: We paid $206 before taxes per night for 2 nights. This was the "Virtuoso" rate during that period. However, we received "bonuses" worth $141. ($28 credit per day for breakfast for 2 days and a $85 dining credit at Sensi) Subtracting this amount from the room rate, it came to around $136 per night, excluding taxes.
Flamingo: We originally reserved a standard room at the NAF group rate of $124 per night before taxes. However, we opted to upgrade to the "GO" rooms at the last minute when we were informed by the check-in clerk that some of the "GO" rooms were ADA compliant. We were previously told when we called up to reserve the room that none of the "GO" rooms were handicap accessible. The upgrade cost an extra $44 per night, making the grand total $168.
Wynn: I booked the room directly from the hotel at a special promotional rate of $199 per night before taxes. This included a $100 resort credit that is good for dining at the hotel's restaurants, shows or spa expenses. Since we only stayed one night and had already planned to dine at the hotel, our out-of-pocket for the room was $99.
The moral of the story is that 4 star properties are more affordable than you think. It really depends on what you are looking for or what services you value. And then, there are the intangibles. The Flamingo is young and boisterous with girls and boys with spiky blue hair that woke us up three in the morning with their drunk hollering and running up and down the hallway on our floor.
This post is by no means an endorsement for any of the three hotels mentioned. I am merely sharing our experiences and observations on this trip with you. If you should happen to use the above information as a reference, please beware, as Richard is fond of saying, "your mileage may vary".
Wednesday, April 9, 2008
National Ataxia Foundation Annual Membership Meeting 2008
Thanks to the folks from the Arizona Ataxia Support Group, the NAF Annual Membership Meeting held in Las Vegas last month went off without a hitch. The event lasted three days with work shops, speakers, a silent auction and an evening banquet. We, as first timers, thoroughly enjoyed ourselves while meeting other ataxians and their families. Along the way, we saw Dr. Perlman and Mike Fernandes. Here are some of the highlights:
Friday, 3/28, started out with different workshops in the morning. We attended the following:
"Speech & Swallowing" with Gail Lommen who is a Speech Language Pathologist. She suggested the Lee Silverman Voice Treatment in helping with speech problems.
"Accessible Travel" with Cyndi Segroves, a travel professional who herself is mobility-impaired and uses a power wheelchair.
"Dancing with Ataxia" with Thomas Clouse, MD, who himself has ataxia but is able to walk with a normal gait and even dances on a regular basis. He shares his insight on how to regain the ability to walk. We were so impressed by what we saw that we purchased his instructional CDs.
The afternoon was devoted to "Birds of a Feather" meetings for ataxians, parents of ataxians and caregivers/spouses of ataxians. This is a time for people with the same type of ataxia to meet in small, informal groups to discuss and share their experiences and concerns of the disease.
Saturday, 3/29, the day started with talks and presentations by doctors and researchers on the latest about ataxia. Dr. Huda Zoghbi who, together with Dr. Harry Orr, first identified the SCA1 gene in 1993, spoke on "Translational Studies in Spinocerebellar Ataxia". In the middle of her presentation, I had a distinct sense of deja vu. I was convinced that I've seen the research on the mice before, but where? Then I recalled this post that I did back on September 30 last year. Unbeknownst to me at the time of that post, the speaker on the Youtube video was Dr. Huda Zoghbi! It was, however, much more exciting to hear Dr. Zoghbi speak in person.
The last person to speak that morning was Dr. Chip Wilmot. He spoke about "Ataxia Patient Registries". In order to facilitate both researchers and patients with ataxia in obtaining up to date information on the disease, it is vital that all ataxians register themselves with the Cooperative Ataxia Registry. As of now, only 370 people have registered. One of these 370 is Richard. 36 of these 370 people have SCA3. We are sure that there has got to be more than 36 MJD-ers in the United States alone. Please consider registering if you're an ataxian. Dr. Wilmot will be happy to answer any of your questions regarding the registry at:
Emory Ataxia Center
404-728-4782 (direct line, please ask for Cathy Wood)
Doctors Wood, Subramony, Schmahmann, Orr and Fahey spoke in the afternoon session. We feel privileged to actually see and meet researchers (Subramony & Orr) whose picture and articles appear regularly in Generations at the meeting.
The silent auction and NAF banquet rounded out the evening.
Sunday, March 30, our beloved Dr. Perlman started the morning with her presentation "FRDA Clinical Trials". Her talk was not just about Friedreich's Ataxia alone. She spoke at length on the most recent clinical trials on different types of ataxia and issues pertaining to clinic trials in general. She reminded people to do their part by registering with the Cooperative Ataxia Registry. For more information about ongoing clinical trials in the U.S., please go to:
www.clinicaltrials.gov
Dr. Arnulf Koeppen spoke about "Brain Tissue Repair in Herediatary Ataxia". He was followed by Dr. Broyna Keats who talked about "RNAi Research". Dr. Keats wittily called her speech "Shooting the Messenger". RNAi refers to the method of RNA interference to silence or prevent the mRNA (the "messenger" RNA) of a certain gene or genes from being expressed. Doctors Andrew Fire and Craig Mello were awarded the Nobel Prize for Medicine in 2006 for their discovery of RNAi. I wrote about our recent encounter with Dr. Fire here. Dr. Keats also told the audience that there is already an experiment done on SCA1 infected mice using the RNAi technique. This is encouraging news indeed even though human trials are in the very distant future.
The three day conference came to a close by early afternoon on Sunday.
We were told, unofficially, that next year's NAF Annual Membership Meeting will be held in Seattle, WA. See you then!
Friday, 3/28, started out with different workshops in the morning. We attended the following:
"Speech & Swallowing" with Gail Lommen who is a Speech Language Pathologist. She suggested the Lee Silverman Voice Treatment in helping with speech problems.
"Accessible Travel" with Cyndi Segroves, a travel professional who herself is mobility-impaired and uses a power wheelchair.
"Dancing with Ataxia" with Thomas Clouse, MD, who himself has ataxia but is able to walk with a normal gait and even dances on a regular basis. He shares his insight on how to regain the ability to walk. We were so impressed by what we saw that we purchased his instructional CDs.
The afternoon was devoted to "Birds of a Feather" meetings for ataxians, parents of ataxians and caregivers/spouses of ataxians. This is a time for people with the same type of ataxia to meet in small, informal groups to discuss and share their experiences and concerns of the disease.
Saturday, 3/29, the day started with talks and presentations by doctors and researchers on the latest about ataxia. Dr. Huda Zoghbi who, together with Dr. Harry Orr, first identified the SCA1 gene in 1993, spoke on "Translational Studies in Spinocerebellar Ataxia". In the middle of her presentation, I had a distinct sense of deja vu. I was convinced that I've seen the research on the mice before, but where? Then I recalled this post that I did back on September 30 last year. Unbeknownst to me at the time of that post, the speaker on the Youtube video was Dr. Huda Zoghbi! It was, however, much more exciting to hear Dr. Zoghbi speak in person.
The last person to speak that morning was Dr. Chip Wilmot. He spoke about "Ataxia Patient Registries". In order to facilitate both researchers and patients with ataxia in obtaining up to date information on the disease, it is vital that all ataxians register themselves with the Cooperative Ataxia Registry. As of now, only 370 people have registered. One of these 370 is Richard. 36 of these 370 people have SCA3. We are sure that there has got to be more than 36 MJD-ers in the United States alone. Please consider registering if you're an ataxian. Dr. Wilmot will be happy to answer any of your questions regarding the registry at:
Emory Ataxia Center
404-728-4782 (direct line, please ask for Cathy Wood)
Doctors Wood, Subramony, Schmahmann, Orr and Fahey spoke in the afternoon session. We feel privileged to actually see and meet researchers (Subramony & Orr) whose picture and articles appear regularly in Generations at the meeting.
The silent auction and NAF banquet rounded out the evening.
Sunday, March 30, our beloved Dr. Perlman started the morning with her presentation "FRDA Clinical Trials". Her talk was not just about Friedreich's Ataxia alone. She spoke at length on the most recent clinical trials on different types of ataxia and issues pertaining to clinic trials in general. She reminded people to do their part by registering with the Cooperative Ataxia Registry. For more information about ongoing clinical trials in the U.S., please go to:
www.clinicaltrials.gov
Dr. Arnulf Koeppen spoke about "Brain Tissue Repair in Herediatary Ataxia". He was followed by Dr. Broyna Keats who talked about "RNAi Research". Dr. Keats wittily called her speech "Shooting the Messenger". RNAi refers to the method of RNA interference to silence or prevent the mRNA (the "messenger" RNA) of a certain gene or genes from being expressed. Doctors Andrew Fire and Craig Mello were awarded the Nobel Prize for Medicine in 2006 for their discovery of RNAi. I wrote about our recent encounter with Dr. Fire here. Dr. Keats also told the audience that there is already an experiment done on SCA1 infected mice using the RNAi technique. This is encouraging news indeed even though human trials are in the very distant future.
The three day conference came to a close by early afternoon on Sunday.
We were told, unofficially, that next year's NAF Annual Membership Meeting will be held in Seattle, WA. See you then!
Wednesday, March 19, 2008
Beike Stem Cell Media Publicity
A friend, Nick, who I met while at Nanshan, gave me a pointer to a recent NPR Article. This makes me think of the various efforts to report on this medical tourism phenomena. I know I've been contacted by journalists from Forbes, Associated Press, the UK. We've also seen publicity from ABC Night Line, an Australian web column, etc.
I applaud these efforts to publicize this phenomena. I hope that the media can present a balanced view of matters. This is all the more imperative given that dissenting views do exist from patients, despite what Beike may say.
I applaud these efforts to publicize this phenomena. I hope that the media can present a balanced view of matters. This is all the more imperative given that dissenting views do exist from patients, despite what Beike may say.
Wednesday, March 5, 2008
Out of the mouths of babes
Richard and I just returned home from Professor Christopher Scott's stem cell class at Stanford University. It was an honor to be asked to speak to his class about our experience in China. We learned a lot about the subject of stem cells by taking his course last summer.
We recently came across an article about China stem cell treatment co-written by AP reporter Alan Zagier. Mr. Zagier contacted Richard last May to ask him about our trip to China. What is even more interesting is a commentary on Mr. Zagier's article posted on this blog. I was both surprised and delighted to learn that the author of this insightful piece was a 10th grade student. The blog is the product of a school project and the posts written by "the brilliant minds of Jesse's 10th grade World History class."
We recently came across an article about China stem cell treatment co-written by AP reporter Alan Zagier. Mr. Zagier contacted Richard last May to ask him about our trip to China. What is even more interesting is a commentary on Mr. Zagier's article posted on this blog. I was both surprised and delighted to learn that the author of this insightful piece was a 10th grade student. The blog is the product of a school project and the posts written by "the brilliant minds of Jesse's 10th grade World History class."
Thursday, February 28, 2008
News from Bergamo
We recently received an email from Fabio about his blog on ALS. We met Fabio and his mother, Nadia, at Nanshan Hospital last year. Nadia has ALS and underwent stem cell treatment at the same time as Richard. Despite the language difficulty, it was easy to quickly warm up to this nice family. We think of them often.
Wednesday, February 27, 2008
ABC Nightline 2/15/08
Our friend George sent us this link to a recent ABC Nightline story on stem cell treatment in China. Here's the video link to the same story.
Monday, January 21, 2008
Update on PhosChol
Richard has taken the PhosChol supplement for a month now and unfortunately has not noticed any substantial improvement. He'll finish the bottle but will probably not order any more. The consensus among the folks on the MJD board who volunteered to be the PhosChol guinea pigs is that the supplement has not brought about a measurable change.
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