• Bill Osullivan became a registered member 1 month, 3 weeks ago

    • 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 keyword in the forum’s search bar. If you have any questions, concerns, or even suggestions, just let me or Amanda (who shares co-moderator duties with me) know, and we will do our best to help you.

      Please note that this forum’s purpose is to discuss issues related to ALS, not to provide diagnosis or medical advice.

      Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar

    • Thank You for the invite. Looking forward to future conversations.

    • 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 history of ALS and we know that we have a genetic mutation too. Our mutation is on the SOD1 gene and is associated with slow progression ALS. I lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
      Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.

      Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum! We look forward to getting to know you.

      • 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 and the first in our family to know Our gene mutation is one of the more uncommon CHCHD10 I have a large family counting me 9. Some have elected to find out other not. So far my daughter, one brother and his son have the defective gene. My mother, her sister and three of her brothers all passed due to ALS. My daughter and I are involved in studies at Columbia University with DO Neil Schneider who is working on an ASO called Silence ALS. We also are working with NIH as they have a study of our specific gene. Sorry for the long note. Oh my mother and her siblings lived with ALS for between 8 – 13 years so here’s to me doing the same.
        Regards, Bill

        to ALS. I am the

        • 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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