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Angelique Prins

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@angeliqueprins

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    Angelique Prins replied to the topic Should I get genetic testing? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    My family had familiar ALS – FUS gene. It is coming from my father’s site and caused allready a lot of sickness and dead :(. My father, 2 sisters and 1 brother died on ALS, so only 1 one sister of him has no symptoms. Some of there clildren also died on ALS allready. After that I descided to test myself and unfortunately I also have the mutation b…[Read more]

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    Kathryn F. Kennedy and Profile picture of Angelique PrinsAngelique Prins are now friends 2 years, 1 month ago

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    Angelique Prins replied to the topic Biomarker research in the forum Research Topics 2 years, 6 months ago

    Hi Amanda, I think you talk about this great results from a study in America on SOD1 and hopefully after the good results also for the other genes like FUS. https://als.be/nl/Injectie-door-virus-afgeleverde-gen-inactiverende-vector-blokkeert-ALS-degeneratie.

     

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      Amanda replied 2 years, 6 months ago

      Hello Angelique! I checked out the website but I can’t read it! I know that there are numerous research teams working and sharing information, so it is likely it is the same study.

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    Angelique Prins started the topic Research for FUS gene. in the forum Research Topics 2 years, 7 months ago

    Hi all,

    First of all I want to say that I am so sorry that we need this website and some matter connect to ALS. I am angelique prins and I am living in the Netherlands. My connection to ALS is the familiar ALS Fus gene. My grandmother, father, aunt, uncle en 2 nieces, my 3th niece is sick right now. After living 22 years in fear I decided to…[Read more]

    • Profile picture of Amanda
      Amanda replied 2 years, 7 months ago

      Angelique,
      I am deeply sorry to hear about your family’s history with ALS. It is very similar to my family’s history. I also have a mutated gene associated with ALS, the SOD1 gene. I’ve lost my grandfather, father, 2 aunts, two great aunts and several cousins to ALS. Right now, I have one cousin that was just diagnosed. It’s scary to know you…[Read more]

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    Angelique Prins posted a new activity comment 2 years, 7 months ago

    Thanks for adding me. I will open a new post where I will introduce myself and ask some questions.

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    Angelique Prins became a registered member 2 years, 7 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 7 months ago

      Hello Angelique,
      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…[Read more]

    • Profile picture of Amanda
      Amanda replied 2 years, 7 months ago

      Hello Angelique, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let u…[Read more]

    • Profile picture of Angelique Prins
      Angelique Prins replied 2 years, 7 months ago

      Thanks for adding me. I will open a new post where I will introduce myself and ask some questions.

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