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    • #13957
      Angelique Prins

      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]

    • #13960

      Hi Angelique,

      I am sorry for you and your family.

      1) There are some research on FUS gene mutations. For example look at the following link, those scientists are in Belgium, so not far from the Netherlands.

      2) I am not sure there is a better support in US than in Western Europe (for example there are many great people in Ulm).

      3) see point 1

      4) Nurown is a genetic therapy that makes CNS cells secreting neurotrophic factors (it helps failing neurons), while not perfect it could be used by all ALS patients.

      My best wishes


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