I have not posted on this board, but have been 'lurking' for some time. When I saw your post, I felt the need to reply.
I have a close family member that was diagnosed with bulbar ALS about 1.5 years ago. Since her diagnosis, she has been rapidly declining. As I write this, she is in Israel undergoing the stem cell treatment that you mentioned. I can't be sure that she's seeing the same dr., however, when I googled his name and saw that he was affiliated with Hadassah, I do believe it's him. I say this because another family member with close ties to Hadassah did all the research and made the arrangements to go to Israel.
Unfortunately, at this time, I don't have very much information regarding the treatment. They will be returning later this week, and I will find out as much as I can. I do know that she will be returning to Greece in 6 weeks for some type of injection which is not legal in Israel (or the U.S.) - again, I'm sorry that I can't give you more information than that.....but I promise to find out, and will post as soon as I know more.
Just wanted to let you know.......hope this helps in some way.
thanks vemma, appreciate the information. please keep us posted on your relitives progress. i know that they are taking names for anyone interested in the next study with will take place in a few months. i am interested, but only if it is done in the US.
I understand the skepticism......I am skeptical myself. I honestly don't know enough about it, and shouldn't express an opinion one way or another, however, if this stem cell treatment was something that truly makes a difference in the lives of ALS patients, you would think that someone would be shouting it's praises from the rooftops, right?
Desperate situations sometimes call for desperate measures....and she is willing to do whatever it takes to improve and prolong her quality of life.....some of us may believe that taking this route is grasping at straws, while others believe in miracles - I don't think there's any right or wrong answer.....you just have to have hope. One day a cure is going to be found - it may or may not be cured with stem cells....I think she's willing to be a guinea pig for this trial even if it means that it may not benefit her, but will others in the future - and that's both brave and noble.
I admire her strength and perserverance in pushing forward and not giving up - but fear that the traveling will take a toll on her already fragile health. Although I have mixed feelings regarding this treatment, I have to believe that anyone affected by this disease has the right to do what they think is best for themselves. If this treatment gives someone hope, then it's the right decision for them.
I will post again when she returns from Israel, and will give you as much info as I can.
In the meantime, take care everyone.
i found this while doing some research online and wanted to mention it. I dont understand why this country will nto move forward with more stem cell research. i am a religious person not as much as I should lol but still believe in god and Jesus but think religion and the government shoudl not stand in the way if something will help cure a disease or improve someones life.
December 31, 2007 Stems of Hope for Treating Incurable Diseases
Two Professors at the Hadassah University Hospital in Jerusalem have succeeded in improving the condition of MS and ALS patients by using stem cells transplants. The researchers extracted stem cells from each patient's bone marrow, cultured them, and then injected them into the patients' spine. The encouraging results of this small clinical study may give hope to those who suffer from these incurable diseases, as well as to researchers developing stem cells techniques for treatment of other diseases.
According to Professor Karussis, the effectiveness of stem cells was initially studied in laboratory animals, where it was found that stem cells from bone marrow can reduce cerebral damage and improve the animal's functioning. During the past two years Professor Karussis has conducted clinical trials with 9 patients suffering from multiple sclerosis and with 16 patients suffering from ALS. "Most of the patients who underwent this process report an improvement in their condition," Professor Karussis said. The purpose of this initial trial was to identify undesired effects of the procedure. So far, no major safety issues have been encountered. However, a controlled larger scale clinical trial should be conducted in order to establish the safety and efficacy of the treatment.
Here's the thing with stem cells, let's take availability, source and religion completely out of the picture and look simply at the science. Stem cells are the "Jack-of-all-trades" cells. They can grow into anything, neurons, skin, liver, etc. The problem is making them grow into what we want/need. In our case we want those neurons and the associate glial cells but the problem is no one knows where that switch is. Another issue is even if the stem cells should start growing new neurons (big IF). Those neurons will still be susceptible to whatever is killing the rest off. Lastly, no one knows for sure what introducing stem cells into the body will do down the road. I have read of several cases of cancer believed to be caused by the treatments but again this is supposition because just like ALS no one knows.
I believe a treatment/cure from stem cell research is highly possible but at this point there are too many unknowns to guess. Research in the U.S. isn't going to happen until we are allowed to move outside the existing 12 stem cell lines. This is not a simple task because at that point you invite politicians, scientists and the religious community all to play on the same playground and we know they don't get along at all. Given the current lack of science behind stem cell treatments, the cost to get them and the fact that they can't be given in the U.S. I look to other options. In the future maybe but I'm not going to hold my breath.
I have religious reservations about using embryonic stem cells. However, recent research has found that other non-embryonic stem cells (also known as adult stem cells), have already been found to have therapeutic effects on certain conditions. Also, there is mounting research that adult stem cells can differentiate into other types of cells.
i sent the article about dr. karusis and the stem cells to my dr. at the u of va who is the head of the neurology dpt there and this was his reply:"i am unaware of the research described at hadassah hospital. this is most likely, because the results of the research have not been published yet. i would be cautious about anecdotal reports, such as these attributed to the professor karussis, since they have not yet been validated and subjuct to peer-reviewed scrutiny."
i am going to ask my dr's at u of va when i go on wednesday for my clinical visit if they
know of anyone here in the US involved in such studies.
my family is ready to pack me up and send me to isreal...it scares me to go out of the country for medical attention and the fact that vemma's relative had to go to greece for an injection/treatment that was illeagle in both isreal and US.
there is no doubt in my mind that stem cells may be our answer coming down the pike...
we have to be open to any and all options
I apologize for not responding sooner. I didn't feel as though I had much more info than I did in my earlier post. Here's what I know.....it's been approximately 3 weeks since my relative had bone marrow extracted - they are now harvesting the cells which will create about 50 million stem cells. These new cells will be injected in Greece in approximately 4-6 weeks.
Apparently this trial has included mostly MS patients - I don't know the exact numbers, but there haven't been nearly as many ALS patients.
I really don't have much more information at this point. I will give you an update upon their return from Greece.
In the meantime, I continue to read and learn as much as I can from all of you...thank you for that......