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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...

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

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...

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...

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...

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...

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.

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...