@amanda-sifford
-
Amanda started the topic New to Caregiving? in the forum A Forum for ALS Caregivers 1 week, 2 days ago
Since the pandemic restrictions have started to ease up in many areas, people have been able to go to some of their appointments. With that, we have seen an increase in our community the past several weeks and many are new to ALS and caregiving. What advice do you have for our new members that are in the caregiver role? Have you found support…[Read more]
-
Amanda posted a new activity comment 1 week, 2 days ago
Hello John, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 1 week, 2 days ago
Hello Kris, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 1 week, 2 days ago
Hello Ken, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 1 week, 2 days ago
Hello Miri, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda started the topic Team Gleason in the forum ALS Awareness and Advocacy 1 week, 4 days ago
The Team Gleason organization is one of my favorite organizations in the ALS community. It has a unique approach to supporting pALS and finding a cure for ALS. Team Gleason has 3 goals including:1. “Help provide individuals with neuromuscular diseases or injuries with leading edge technology, equipment and…[Read more]
-
Amanda posted a new activity comment 1 week, 4 days ago
Hello Diana, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 1 week, 4 days ago
Hello Robby, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 1 week, 4 days ago
Hello Heide, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 1 week, 4 days ago
Hello Linda, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 1 week, 4 days ago
Hello Pat, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Thank you Amanda! Since I was recently diagnosed, this is all new to me. It has been a lot to take in..my emotions have been all over the place!! I do appreciate your welcome, and look forward to learning, and sharing.
-
-
Amanda started the topic NurOwn Research in the forum Research Topics 1 week, 5 days ago
We’ve had a lot of conversation about NurOwn in our online community. I Am ALS and the ALS Association are teaming up to support BrainStorm’s research on biomarkers. The company also agrees to share data with other researchers in effort to help with ALS…[Read more]
-
Amanda started the topic Global Day 2020 #2 in the forum ALS Awareness and Advocacy 2 weeks, 2 days ago
I encourage everyone in our online community to post something about ALS on June 21st! Lets flood the social media with facts about ALS and raise awareness.
”
Global Day is an event that knows no boundaries, so everybody can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND.
Ways to…[Read more]
-
Amanda posted a new activity comment 2 weeks, 2 days ago
Hello Lisa, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 2 weeks, 2 days ago
Hello Vmanj, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
-
Amanda posted a new activity comment 2 weeks, 2 days ago
Hello Rachel, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
-
Amanda posted a new activity comment 2 weeks, 2 days ago
Hello Mollia, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
-
Amanda posted a new activity comment 2 weeks, 2 days ago
Hello Elizabeth, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
-
Amanda posted a new activity comment 2 weeks, 2 days ago
Hello Simeon, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
-
Amanda posted a new activity comment 2 weeks, 2 days ago
Hello Lynn, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
- Load More
Hello Amanda. I too have familial ALS. My Grandmother on my fathers side had the c9orf72 gene. I have 8 that have passed in my family from ALS and Frontal lob dementia.