Search results

  1. T

    Familial ALS continued

    Hello- For the backstory on this thread, please see the original Familial ALS posting. Perhaps a moderator can combine these two? We have received the gentetic testing results from my husbands brother, who had ALS-like neuromuscular degeneration combined with a family tree with many ALS and...
  2. T

    Brainstorm considering Right to Try for NurOwn access

    Hope this link comes through OK https://www.marketwatch.com/story/only-one-patient-will-get-access-to-this-experimental-als-therapy-before-its-approved-2018-06-26?siteid=bigcharts&dist=bigcharts
  3. T

    Familial ALS

    Progress: The sample from my bil has arrived at NU and is in the process of being analyzed. One of the other ALS cases was seen at a teaching hospital and almost certainly has samples somewhere. He died prior to C9 being identified, so we are unsure if anything was retroactively tested for...
  4. T

    Familial ALS

    Not a huge update, but at least something. I had gotten sidetracked when my father passed away June 10 - 93 good years. Now ready to get back to it. We have compiled the family tree to send in to NU, and I am also sending them the names and contact info of the siblings that have consented to...
  5. T

    Familial ALS

    Sadly, my sil passed away 5/24. We had sent her family the information for genetic testing and then backed down to a respectful but supportive distance. They decided against it. Four of the five remaining siblings are on board with whatever they can do to assist. My niece is looking through...
  6. T

    Familial ALS

    Thank you all for your advice. I am going to do my best to keep you all updated in our progress. So far, we have contacted and received replies from CRiALS, Pre-FALS, and Northwestern Univ Feinberg School of Medicine. Miraculously, one of the brothers had copies of their mothers complete...
  7. T

    Familial ALS

    Thank you so much Nikki, this definitely helps. Husband, myself, and our 3 children live in Alaska, but the rest of the family is in the Midwest and west coast. We are of European, mostly Germanic, descent.
  8. T

    Familial ALS

    Thank you for adding me/us to the forum. In brief, here is our story: My husband lost his mother to ALS when she was 59 years old. She had one aunt, one uncle, and two first cousins who also passed from ALS. There were a couple other family members who may or may not have had early signs, but...
Top