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 passed from other causes. My husband had 7 brothers and sisters counting him, and they are now all late 50's to late 60's. About 3 years ago the oldest brother began exhibiting neurological symptoms, but he also had several confounding other medical conditions. Eventually he was in a wheelchair, but never lost the ability to speak or swallow. Along the way, he declined any further testing that would lead to a definitive diagnosis, and died of a respiratory arrest May 9 2018. Two days ago we were notified the youngest sister, who had distanced herself from the family, was diagnosed with ALS 14 months ago. She has a feeding tube and is currently hospitalized in ICU on a ventilator. She does not yet have a trach, but we are led to believe that is the plan. One of the surviving brothers has an adult daughter who has been experiencing bilateral weakness in her hands and is pursuing a diagnosis. A group of us in the family have banded together to take this on. We are interested in research programs, drug trials, genetic testing and mapping, and absolutely anything else. So far we are a nurse practitioner, medical researcher, nurse and editor of a nursing research journal, and two more RN's one of which worked for a research program. Can anyone give us any advice on jump starting this pursuit? We all were in denial for so many years, when there were no new cases in the family, but now we need to deal with what is here and may be coming.