Shelby2306
New member
Spinocerebellar ataxia type 7 (SCA7) is an autosomal dominant cerebellar ataxia caused by a CAG repeat expansion in the ataxin-7 gene. In humans, SCA7 is characterized by marked anticipation due to intergenerational repeat instability with a bias toward expansion, and is thus regarded as the "most" unstable of the polyglutamine diseases.
Alan is a boy of 9 years and he has been diagnosed with Spinocerebellar ataxia type 7. This is a rare genetic disease that causes the cerebellum to atrophy and it is a progressive disease that leads to death. Alan is quickly loosing his motor skill and his sight. The diagnosis was given almost a year ago. They are treating Alan with physical therapy and a few vitamins. These treatments help with the effects of the disease and are not meant to be cures.
Alan?s mother Linda is a schoolteacher in Houston, Texas. She has primary custody of Alan. I have offered to help the family with any and all medical costs associated with fighting this disease. I?ve been reading everything I can get my hands on related to the disease. It appears that when this disease manifests itself in childhood the life expectancy is less than 24 months.
While doing this research I have found several websites where embryonic stem cell treatments are offered. These sites do not offer results of clinical trials but they do have ?blogs? where the patient updates their progress after receiving embryonic stem cell injections. The results range from the least favorable report of adverse reactions (increases in seizures) to good results where improvement in reversing the negative effects of the disease has been recorded.
Alan?s doctor of the Blue Bird Circle Clinic for Pediatric Neurology in Houston, Texas and he has respond to a query from Alan?s mother as follows:
?At your request, I visited the website of the Chinese institution that is now doing olfactory bulb cell transplants in patients with neurological problems.
There have been some studies in the US and Europe indicating that in laboratory animals transplanted olfactory cells may help nerve regeneration in conditions such as paralysis die to spinal cord trauma secondary to accidents or other causes.
However, there have been no clinical trials in humans, meaning that we do not know whether or not this treatment would work in human beings.
In the US and Europe, only medical treatments that have undergone clinical trials and were shown to work can be offered to patients. This is to give the patients some guarantee that the treatment will have at lease some change of success.
It is possible that clinical trials for this form or treatment will become available in the US when scientist feel that there is enough evidence that it may work.
Until then, I would not recommend attempting a form of treatment whose outcome and complications are unknown.?
I do not blame the doctor for writing the above however; I don?t believe that Alan has the time to wait for the trials to be completed in the US, especially given the current political environment in the US. We would like to find a clinic with documented favorable results from the embryonic stem cell treatments and then verify that the clinic is an ethical medical establishment. Any and all help will be greatly appreciated.
Alan is a boy of 9 years and he has been diagnosed with Spinocerebellar ataxia type 7. This is a rare genetic disease that causes the cerebellum to atrophy and it is a progressive disease that leads to death. Alan is quickly loosing his motor skill and his sight. The diagnosis was given almost a year ago. They are treating Alan with physical therapy and a few vitamins. These treatments help with the effects of the disease and are not meant to be cures.
Alan?s mother Linda is a schoolteacher in Houston, Texas. She has primary custody of Alan. I have offered to help the family with any and all medical costs associated with fighting this disease. I?ve been reading everything I can get my hands on related to the disease. It appears that when this disease manifests itself in childhood the life expectancy is less than 24 months.
While doing this research I have found several websites where embryonic stem cell treatments are offered. These sites do not offer results of clinical trials but they do have ?blogs? where the patient updates their progress after receiving embryonic stem cell injections. The results range from the least favorable report of adverse reactions (increases in seizures) to good results where improvement in reversing the negative effects of the disease has been recorded.
Alan?s doctor of the Blue Bird Circle Clinic for Pediatric Neurology in Houston, Texas and he has respond to a query from Alan?s mother as follows:
?At your request, I visited the website of the Chinese institution that is now doing olfactory bulb cell transplants in patients with neurological problems.
There have been some studies in the US and Europe indicating that in laboratory animals transplanted olfactory cells may help nerve regeneration in conditions such as paralysis die to spinal cord trauma secondary to accidents or other causes.
However, there have been no clinical trials in humans, meaning that we do not know whether or not this treatment would work in human beings.
In the US and Europe, only medical treatments that have undergone clinical trials and were shown to work can be offered to patients. This is to give the patients some guarantee that the treatment will have at lease some change of success.
It is possible that clinical trials for this form or treatment will become available in the US when scientist feel that there is enough evidence that it may work.
Until then, I would not recommend attempting a form of treatment whose outcome and complications are unknown.?
I do not blame the doctor for writing the above however; I don?t believe that Alan has the time to wait for the trials to be completed in the US, especially given the current political environment in the US. We would like to find a clinic with documented favorable results from the embryonic stem cell treatments and then verify that the clinic is an ethical medical establishment. Any and all help will be greatly appreciated.