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  • genetic screening/unique situation

    Posted by juliez on May 15, 2024 at 12:58 pm

    Hi everyone,

    I’m looking for help. My father died from ALS and now my cousin has ALS. From what I have read we may be at high risk of having familial ALS. My cousin was diagnosed and has since been undoctored. Refuses to go to any doctor. He did end up in the hospital recently after a fall and is now set up with hospice.

    My cousin has said he would like genetic testing. I agree it would help with future generations. So, I am advocating for him. I have found the ALS Identified program offering free genetic screening and it can even be done from home. The big problem is that he does not have a doctor to order the test. I checked with hospice and they said their doctor would not, and would not make an acception, because genetic testing would be aggressive care.

    I would appreciate anyone’s ideas. If you sign up for the ALS registry do they do the genetic testing? Is it a long process?

    Thanks everyone


    Sandy replied 2 days, 6 hours ago 7 Members · 6 Replies
  • 6 Replies
  • Richard L Wheeler

    May 16, 2024 at 4:50 pm

    Scheduled appointment with neurologist they can order a genetic test. At least mine did here is SW Ohio.

  • Mischa

    May 17, 2024 at 9:02 am

    If you’re in the US you can get free genetic testing, without referral and at home, through Light the Way:

  • smammon

    May 17, 2024 at 9:08 am

    Hi juliez,

    In addition to a neurologist, a genetic counselor can be a great source of support and a resource for evaluating a family history of ALS. They can order this testing for your family member and help interpret any results. (Many ALS genetic counselors work closely with neurologists as well!)

    You can find a genetic counselor near you or your family member by searching Feel free to be in touch if you’d like more info about the genetic counseling and testing processes or need help finding a genetic counselor.

    Best of luck,


  • Tresa

    May 17, 2024 at 5:04 pm


    There are lots of resources, and just learning how to access them. We too have Familial ALS C9orf72 gene. We have five family members with ALS. My husband did the genetic testing and we paid out of pocket of $1600.00 with AETNA. My daughter and I did her genetic counseiling before she gets tested. UTSW Genetic Counsel Team is ordering my daughter’s test with Invitae. We were told it will cost $250.00. Good luck. Please feel free to ask any question. Good luck to your and your family. My father in law had bulbar ALS, my husband has bulbar ALS, and now my husband’s brother is presently living with it. My husband had two girl cousins (sisters) who also passed away.

    Bless you,


  • Amanda

    May 21, 2024 at 8:33 am

    Hello Juliez,
    There are several options -and some great suggestions have been posted. There is no wrong way to go about it as long as you are comfortable.

    There is a study focusing on familial ALS – genetics. I’ve actually been tested 3 times. (As if the results would change LOL). Two for two different research programs I volunteered to participate in; and then when I was diagnosed, AETNA wanted a new test to verify I qualified for QALSody. That process only took about a week to get the information back. The information obtained from research is not supposed to be used in medical records. I sent you some contact information if you choose to go this route. Again, whatever you and your family decide to do is the right thing!


  • Sandy

    May 21, 2024 at 9:49 pm

    What Mischa said. Hope you are successful in getting tested and any family members who want to be. My husband was tested at no cost through Biogen.

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