@bill3937
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Bill Osullivan replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 week ago
I mix with tap water stir well drink as fast as I can. Then eat 2 or 3 hershey kisses. The chocolate cleans most of the after taste. I wipe my lips to remove the taste then brush my teeth. No real issues and no after taste
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Bill Osullivan replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 7 months ago
No need to wait for VA if you have medicare, the latest booster includes protection against latest variants including omicron is available now. We got ours at CVS last week other drug chains also have it available.
PFIZER 12YR+ COVID-19 BIVALENT
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Bill Osullivan replied to the topic What's the latest news on AMX0035? in the forum Research Topics 8 months, 2 weeks ago
Hello Jerry, Our family has the CHCHD10 variant c.44G>T (p.Arg15Leu). We lost our mother and 4 of her brothers and sisters to ALS. I have 8 brothers and sisters some have tested for the defective gene and are positive including my son & daughter. I am the oldest at 65 and the only one currently with ALS degradation. Agree it is time to find a…[Read more]
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Bill Osullivan replied to the topic What's the latest news on AMX0035? in the forum Research Topics 8 months, 3 weeks ago
I found the article you shared about FDA rushing approval of AMX0035 very interesting. I Read the comments that Bryan Trayor of NIH voted to approve and was interested in the company talking about removing from market is history does not support slowing down progression.
Dr Trayor and his team were interested in our family gene mutation and…[Read more]
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Bill Osullivan posted a new activity comment 10 months ago
Sorry, I am the oldest of my brothers and sisters at 66 going on 67. Retired from 23 year Navy career and another 23 years in industry.
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Bill Osullivan posted a new activity comment 10 months ago
I will do my best to add value. I have a very long history of ALS in our family going back to Germany in the mid 1800’s. Of course some did not know what the wasting but later my great grandfathers
siblings and our branch of the family have had 22 relatives attributed to ALS. When I was finally diagnosed after 18 month, I had the genetic test a…[Read more] -
Bill Osullivan replied to the topic Radicava and side effects in the forum Living With ALS 10 months ago
Hello, I am new to the forum however not new to ALS. Unfortunately our family has the familia version of ALS so I know the progression and outcome only too well. First symptoms 3 years ago when diagnosed doctor put me on Riluzole and daily anti-oxidant cocktail of several over the counter items. Not sure if this is something others are doing. I…[Read more]
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Bill Osullivan posted a new activity comment 10 months ago
Thank You for the invite. Looking forward to future conversations.
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Bill Osullivan became a registered member 10 months ago
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Hello Bill,
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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Thank You for the invite. Looking forward to future conversations.
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Hello Bill,
Welcome 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 ALS. My family has an extensive h…[Read more]
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I will do my best to add value. I have a very long history of ALS in our family going back to Germany in the mid 1800’s. Of course some did not know what the wasting but later my great grandfathers
siblings and our branch of the family have had 22 relatives attributed to ALS. When I was finally diagnosed after 18 month, I had the genetic test a…[Read more]-
Sorry, I am the oldest of my brothers and sisters at 66 going on 67. Retired from 23 year Navy career and another 23 years in industry.
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Sorry, I am the oldest of my brothers and sisters at 66 going on 67. Retired from 23 year Navy career and another 23 years in industry.