@babumjane
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Jane Kriskey started the topic Clinical trials in the forum Using our Forums 7 months, 3 weeks ago
I find it amazing that there are never any trials to participate in. I search all over and see nothing, This is frustrating and also very confusing. I am beginning to wonder if they even exist. One would think that after a few years of searching I would find one that is accepting people. They are either old and finished or filled up. I guess it is…[Read more]
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Jane Kriskey replied to the topic EAP and Right to Try in the forum Research Topics 1 year, 7 months ago
I agree with you, there is no place to get info on this. None of the ALS sites are any help including this site. I would think this site would have info for us. We are left floundering with no help. I find this very sad to say the least.
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Jane Kriskey posted an update 1 year, 11 months ago
I have been reading a lot about AMX0035 and was wondering if there are any trials going on for this. It seems to be very promising and I believe I signed a petition to get it fast tracked. I sometimes miss things going on.
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Hi Jane – – there is a lot going on about AMX0035 🙂 I wrote about it in this week’s column (there’s lots of links) https://alsnewstoday.com/columns/2020/09/15/updates-research-amx0035-clinical-trial-petition/
And we have a forum discussion ongoing here: https://alsnewstoday.com/forums/forums/topic/npr-story-on-amx0035/
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Jane Kriskey replied to the topic Canada Approves New Patent Covering Ibudilast’s Use for ALS Treatment in the forum Research Topics 1 year, 11 months ago
Every time I check the status of drugs I get the same old same on still in trial yadda yadda, Never do I see that you can use the “Right to Try” act and if you do try the drug companies DO NOT have to give it to you. My Daughter’s doctor told her this law was already on the books, under a different name, but our president brought it front and…[Read more]
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Jane Kriskey replied to the topic Berberine and TDP-43 in the forum Research Topics 1 year, 11 months ago
Every day I read about something new that could do this or that! and I wonder if they have this data base now, where all research is available, why are there so many articles about all these drugs but none seem to be researched together. So you want to take this one you read about, then the next day you read about another and you think wow I…[Read more]
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Jane Kriskey replied to the topic NPR story on AMX0035 in the forum Research Topics 1 year, 11 months ago
Thank you for that it was very enlightening and to think 2 young men in their 20’s with a small company could do this but big companies have not been able to over many, many years. That tells me it is not a money maker to them, which seems to be what drugs are all about.
Are there trials going on now for AMX35?
Again, thanks and I hope this will…[Read more]
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Jane Kriskey posted a new activity comment 1 year, 11 months ago
Hi Danielle,
Thanks for your advise. Lisa I believe, is on the list for the Healy Trial but it is only in five states right now, Her doctor thinks it will be in her area in October. That one looks very promising. I do thing there is a lot more attention to ALS now and I am hopeful that , if not a cure, something to prolong life, till there is one…[Read more] -
Danielle Uskovic and
Jane Kriskey are now friends 1 year, 11 months ago
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Hi Danielle,
Thanks for your advise. Lisa I believe, is on the list for the Healy Trial but it is only in five states right now, Her doctor thinks it will be in her area in October. That one looks very promising. I do thing there is a lot more attention to ALS now and I am hopeful that , if not a cure, something to prolong life, till there is one…[Read more]
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Jane Kriskey replied to the topic Lyme Disease vs ALS in the forum Diagnosis Information and General Questions 1 year, 11 months ago
My daughter was tested for Lyme,as we live in the country also and she was bitten a few times but got treated immediately, They did the test twice but as hopeful as we were it was not Lyme, but I cannot hurt to get tested. I have several friends with Lyme and one was almost a vegetable when he found a specialist inLyme and within six months he was…[Read more]
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Jane Kriskey replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 1 year, 11 months ago
There are so many trials going on now it is hard to figure out which are best, My daughter is starting a trial for Clenbuterol next week and I was happy about that, then I read about others and I think this one sounds better so we are a bit confused at this point. This one does not have a placebo, which we like and it is a pill. So I hope they…[Read more]
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Jane Kriskey started the topic Swivel seat for a car in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 11 months ago
Years ago I bought a Chevrolet that came with a passenger swivel seat. It so happened that at that time I had a bad accident and was using a walker. This seat was a great asset to me for getting in and out of the car.
I have never seen that offered again in any car and wonder if anyone knows if one of these seats could be installed. The ones I…[Read more]
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Jane Kriskey replied to the topic Use of Off label treatments. in the forum Research Topics 1 year, 11 months ago
I found Tudca on Amazon and then did some research and to me is seems like no risk in taking it. My daughter goes beginning of Sept to her doctor at Duke and she is going to ask him about his thoughts on it. But I think she should take it as it is not harmful and why not? The Right to Try is really nothing because the drug companies DO NOT have to…[Read more]
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Jane Kriskey posted a new activity comment 1 year, 11 months ago
Hi Steve,
Thanks for your response but I cannot find Mike to read his post on the drugs he has found off label.Where did you find him? -
Jane Kriskey posted a new activity comment 1 year, 11 months ago
There is also a drug called Clenbuterol that is in trial in a few weeks. But this has also been around for a long time for treatment of other diseases and was tried for ALS and seemed to have some good effects yet it is not tried. If people are dying, like my daughter, then we want her to try whatever looks like it has hope, but it is impossible…[Read more]
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Hi Jane, so sorry for your daughter and you. Have you thought about “Right to Try”. It was signed in Jan. My post was also moved to the “Research forum” A gentlemen name Mike had a good suggestion and he is giving his wife two FDA approved drugs off label. Sodium Phenylbutyrate and Tudca. I am thinking to move in that direction for my wife. Good luck
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Jane Kriskey posted a new activity comment 1 year, 11 months ago
Hi Steve,
I read your story and I agree with you 100 pr cent. I do not know why they will not give these druges if you want them. Doesn’t that fall under The Right to Try Act?
I have a granddaughter, now living in Prague, and she just was home for a visit and we are going to have her check if these drugs are available in other countries. We…[Read more]-
There is also a drug called Clenbuterol that is in trial in a few weeks. But this has also been around for a long time for treatment of other diseases and was tried for ALS and seemed to have some good effects yet it is not tried. If people are dying, like my daughter, then we want her to try whatever looks like it has hope, but it is impossible…[Read more]
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Hi Jane, so sorry for your daughter and you. Have you thought about “Right to Try”. It was signed in Jan. My post was also moved to the “Research forum” A gentlemen name Mike had a good suggestion and he is giving his wife two FDA approved drugs off label. Sodium Phenylbutyrate and Tudca. I am thinking to move in that direction for my wife. Good luck
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Jane Kriskey replied to the topic Best Advice or Information in the forum A Forum for ALS Caregivers 1 year, 11 months ago
My daughter gets very little help and has been asking for a social worker to visit for months with no results. She does get great equipment for the ALS foundation which has been a great help.I feel we have to spend almost all day on the computer doing our own research because nothing seems to be easy to access. One example is the Right to Try act.…[Read more]
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Jane Kriskey became a registered member 1 year, 11 months ago
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Hello Jane,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]
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Hello Jane, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Jane,
The “I AM ALS” website has a complete and up-to-date listing of all ongoing clinical trials for ALS. A the top of the page is an explanation. The dashboard is a the bottom:
Jane,
Have you talked with your medical providers about trials? Are you going to an ALS clinic? Often times they have “ins” to trials and studies.
Jane – what are you goals for volunteering? Are you trying to contribute to research? Desire access to experimental medications? Do you have a family history of ALS?
I have seen that the criteria…[Read more]