• Angelique Prins started the topic Research for FUS gene. in the forum Research Topics 1 year, 11 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 ask the result for my self and unfortunately I also have thé mutated Fus gene. I asked for the results so I can help the science to find a cure for this horrible disease but also it will give me time to do the things I really wanted to do. I am 35 years old and my niece is the first 1 who got it after 38 years old so I am praying.

    After this introduction I am asking for help on some points.
    1) Does someone know if there are busy with Fus gene cures? Maybe with crispr of something else?
    2) Can someone provide me information  of people / scientists in America who can help me with information and see if I can be helpful for science. Like phonenumbers, names, University names etc?

    3) Are there more people of this forum who have the familiar Fus mutation? Do you have more information perhaps? The doctor in the Netherlands told me they are not searching for a medication especially for FUS as far as he knows. But I see some post about results so I got the feeling this information is not totally valid.

    4) Does someone know if NurOwn can help in my case and hopefully all the ALS patients? Do we have a good feeling about it?

    Thanks some much for everyone who can give some handles. If you want to email me personally or if there is something I can do please let me know. I am prepared to travel also to America (monthly even) when it is nessecary.

    Greats Angelique Prins

    [email protected]

    • 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 have a mutation that could lead to ALS. I truly understand.

      Have you contacted NurOwn directly? That might be a place to start. I’ve volunteered for numerous studies, and I am currently involved in a long term ongoing study at the University of Miami. I know they are focusing on the SOD1 and C9 genes. I have not heard of them targeting the FUS, but I may not pay much attention because it’s overwhelming when I go. There website is https://www.miami-als.org/ I work with Dr. Benatar. You could call or email and ask if they are researching the FUS mutation or if they know which clinics or universities might me.

      You have a great attitude, and going out and doing all the things you want to do is a great start! No White Flags my friend!!

      Also look at http://www.wumedicalcenter.com/article/Treatment/52013112475.html. I don’t know what all they are involved in but it looks like they are studying FUS. It couldn’t hurt to call or explore options. I’d ask everyone I called if they knew of anything specifically for your family’s genetic mutation. Please feel free to private message me if you need anything.

      Thinking of you!
      Amanda

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