• Veronika Wuyts became a registered member 1 year, 4 months ago

    • Hello Veronika,

      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. 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 Damgmar, thanks for welcoming me, you are actually the reason I became a member: your positivity and tip on the water bottle exercise drew me in. My husband already exercises this now too, thanks to your instructions! I once hope to be able to chat with you in a zoom or so? all the best! Veronika

        • Hello Veronika – – I’m glad my article and tip about the water bottle exercise was helpful! I would be happy to Zoom with you 🙂 Dagmar

          • thanks so much Dagmar, I downloaded your article and will read it first. We went to the doctor yesterday for his second EMG since March. Indeed his arms got worse, rest is stable. She sees us moving more towards FOSMN than to pure ALS, for the moment. The genetic tests for ALS haven’t returned yet. So his porgnosis got a bit better. I didn’t find anything on this site on FOSMN, a rare MSD disease with only 100 known cases in the world. according to the neurologosit it is a variation of ALS, prognosis for the moment seems an average of 8.5 years. Whe suits you best for a zoom? I am in the CET timezone for Brussels. warm regards

    • Veronika, 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!
      Amanda

      • hello Amanda, thank you for weloming me! wow you have some history there and a fight as well. I wish you all the best! warm regards Veronika

        • Thank you! I believe that the biomarker research and the research targeting different genetic mutations is heading some place. I hope that we some breakthroughs sooner than later! If you read any articles outside of BioNews that you find interesting, please feel free to share.

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