@angeliqueprins
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Angelique Prins replied to the topic Welcome to the Club in the forum Living With ALS 4 months, 2 weeks ago
Hi Amanda
Iam so so sorry to hear that you joint the club. And hopefully you get approval of thr FDA for Tofersen!!
In my family we have the FUS mutation. Me and my brother tested both positive for the gen and sitting in the same position. Hopefully stay on side for a long long time but the expectations are not so good if we look at the family…[Read more]
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Angelique Prins replied to the topic Should I get genetic testing? in the forum Diagnosis Information and General Questions 2 years, 4 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
Angelique Prins are now friends 3 years ago
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Angelique Prins replied to the topic Biomarker research in the forum Research Topics 3 years, 5 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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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 3 years, 5 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]
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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 3 years, 5 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 3 years, 6 months ago
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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]
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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]
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Thanks for adding me. I will open a new post where I will introduce myself and ask some questions.
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