@lorricav
-
Lorri Cavaliere replied to the topic Urgently referred to ALS clinic. Anyone here have respiratory and bulbar onset? in the forum Diagnosis Information and General Questions 3 months, 2 weeks ago
Hi Anne, please see a Lyme Literate doctor. I am aware of instances when the diagnosis was wrong. Happened actually to a physician. It can’t hurt. I’m sorry that ALS is 100% fatal. My 29 year old was diagnosed with Bulbar-onset last July. We are going to explore that route. As slim a chance as it is, anything is better than nothing. Message me if…[Read more]
-
Lorri Cavaliere posted a new activity comment 7 months, 4 weeks ago
…a right to live…
-
Lorri Cavaliere posted an update 7 months, 4 weeks ago
This is ridiculous! It’s been over 150 years since the diagnosis of this horrific disease. NurOwn showed promise in some people. Give everyone the chance to live…a carrot is being dangled and it is simply cruel and inhumane. My 29 year old daughter was diagnosed with ALS in August of 2020. The fact that we have to beg to give our children, h…[Read more]
-
Dagmar Munn and
Lorri Cavaliere are now friends 1 year ago
-
Lorri Cavaliere became a registered member 1 year ago
-
Hello Lorri,
Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]
-
Hello Lorri, 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]
-
…a right to live…
Lorri, your feelings are understandable. As most of us in our community know, and are frustrated by, ALS is a Rare Disease and Rare Disease do not get much attention in the field of research or as much funding to cure them. Rare Disease Day is this week end. It is an opportunity for all of us impacted by a Rare Disease to draw attention to our…[Read more]