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Daniel Mitchell replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 2 days, 8 hours ago
My 62nd birthday in July, we just had family reunion last weekend!
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Daniel Mitchell replied to the topic Did You Have to Change Careers, or Even Retire, After Being Diagnosed with ALS in the forum Living With ALS 1 month, 2 weeks ago
Hi Dagmar,
I retired a month after my diagnosis. I was 60, I turn 62 this year. I was an IT professional for 40 years and I was losing dexterity in my hands my voice was changing. My wife and my ALS team all recommended that I retire and I was glad I did.
Daniel
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Daniel Mitchell replied to the topic Clinical trials in the forum Using our Forums 6 months ago
I try also but I’ve had symptoms for four years and was recently diagnosed with ALS in Oct 2020. I’ve been excluded from trial I’ve applied to. It seems the drug companies don’t care about PALS who have this disease for years. We just have to suffer in silence.
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Daniel Mitchell posted a new activity comment 6 months, 2 weeks ago
Hi Dagmar, thank you the welcome. Do you have any ideas on how I can get into drug trials? I was diagnosed October of 2020 and I’ve had symptoms since 2018. I have limb onset, sporadic ALS and my ALSFRS score is 26/27 changes from month to month.
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Hello Daniel,
A good look at what clinical trials are open, their criteria, enrollment, etc. can be found on this page of the I AM ALS website. At the top of the page is an explanation, scroll down to see all the trials.ALS Signal – Explore ALS Clinical Research, Trials and Studies
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Daniel Mitchell replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 6 months, 3 weeks ago
I am unable to get into any drug trials. My ALS score is too low. I’m currently at 26/27 varies from month to month. I’m always excluded because of my score or I’ve had symptoms too long. I got my ALS diagnosis in Oct 2020 and symptoms started in 2018.
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Daniel Mitchell became a registered member 6 months, 3 weeks ago
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Hello Daniel,
Welcome to the forum! I am one of the forum moderators and a person 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 discussions by typing a…[Read more]
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Hi Dagmar, thank you the welcome. Do you have any ideas on how I can get into drug trials? I was diagnosed October of 2020 and I’ve had symptoms since 2018. I have limb onset, sporadic ALS and my ALSFRS score is 26/27 changes from month to month.
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Hello Daniel,
A good look at what clinical trials are open, their criteria, enrollment, etc. can be found on this page of the I AM ALS website. At the top of the page is an explanation, scroll down to see all the trials.ALS Signal – Explore ALS Clinical Research, Trials and Studies
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Hello Daniel,
I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 A…[Read more]
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Daniel,
I’m sure it is frustrating to apply for trials and not be accepted. Unfortunately, when the companies are in the research phase they have to be able to control, predict and measure as many variables as possible. That leaves many pALS in the position of not being accepted into many trials.