ASC-J9 shows a lot of potential. The company that is researching the potential of this compound is currently working with the National Institute of Health (NIH) to perform additional testing on mouse models to help determine the potential and safety of this drug. Once the safety and effectiveness of this compound is confirmed, the NIH will consider sponsoring a clinical trial. This trial could within the next two years if everything goes well.Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.
Even though there doesn't seem to be any current news on how this trial is progressing, I was wondering if you have heard anything...? It seems like nothing has been really said since 2010 or 2011. Any news?
ReplyDeleteThe drug was shipped to NIH for testing on small mammals and is being tested as I write. If it continues to show positive results, it could be available for a human trial in late 2013 or 14.
ReplyDeleteI was just wondering if this has become available for a human trial and how it is going. I am a carrier of this disease and my father passed away from it in November of 2014. I do have a four year old son who I don't know if he has it or not. I have started to research and look into this more since I no longer have my dad to ask. Any information or insight would be appreciated. Thank you.
ReplyDeleteKara,
DeleteFor your son a simple blood test may be needed. If the test shows CAG repeats within limits, you do not need to worry for him.
However, you definitely have it. You are a patient, not just a carrier. It will affect you badly after you reach 80 years. My mom is affected badly since she crossed the age of 80.
So, I repeat. YOU ARE A PATIENT, NOT JUST A CARRIER.
Kara, thank you for your inquiry. I am sorry to hear of your loss. No, the research is still ongoing and they are now trying something slightly different. There is another trial that just started at NIH that we hope will be promising. If you are not a member of the Kennedy's Disease Association (KDA), I would recommend joining so you can stay current on any research and clinical trials. There is also an abundance of helpful advice plus the Forum and chatroom. Should you have any specific questions, please don't hesitate to ask (using the forum or contacting me directly). I look forward to hearing from you. Bruce
ReplyDeleteIt is easy to check if you or your relatives have Kennedy's. A blood test can reveal how many CAG repeats you have.
ReplyDeleteIt is very important to recognize that women are NOT just carriers. They are patients too. If my mom was tested twenty years ago when she was 80 and symptoms started showing up, we, all three generations, would have known we had Kennedy's. They presumed she had Parkinson's. Now at 97, she is suffering a lot from Kennedy's. Women are not carriers. They are patients too. Only they suffer at a later age.