• Jennifer Zink became a registered member 5 months, 2 weeks ago

    • Hello Jennifer,

      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.

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

      • Hello, Dagmar! I was diagnosed 11 years ago this month. My neurologist told me that I would live with ALS for a long time. Is that the same with you?

        • Hi Jennifer, you and I have both been living with ALS for 11 years! Bravo to you!

          My neurologists gave me the same 3-5 year prediction that most patients receive. However, I chose to prove them wrong! And I too, write a blog about my ALS journey: ALS and Wellness Blog (https://alsandwellness.blogspot.com/2015/01/welcome.html)

          Our members will appreciate and enjoy any and all of your helpful comments and posts 🙂

    • Hello Jennifer, 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 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!

      • Hello, Amanda! Are you a pALS, too? I’m truly sorry for your losses. I was told to contact you all by Joan Borowsky of the ALS Association – Philadelphia Chapter, because I have a blog about life before, during, and beyond ALS.
        I’d really like to share my journey with everyone on this site, and I would love to hear their stories.

        • Hello Jennifer. Right now I’m in a pre-fALS study and have been for over a decade. I don’t have enough symptoms to be diagnoses just yet. As for writing or sharing your story you may try reaching out to Kevin Schafer or Michael Morales on this sight. They work for BioNews and over see different aspects of the ALS News Today portion. They are also both members of the forum community. They may direct you to a human resources person. We are growing fast and a lot of us work remotely so we are all over the world! That being said, it may take a day or two to get a response. They are both awesome people!

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