Cheryl Teribury

@Katie,

That is a great idea.  Sometimes it is hard to get some medical teams to do more than just document ALS symptoms.  Please let us know how it works out.

Amanda

@ Brian,

I’m curious where you learned that 95% of pALS have Tick Borne Infections? Do you have a reliable resource you can share?  When I researched this I found that this is a misconception partially because the symptoms mimic Lyme disease. ALS News Today did an article that addressed some misconceptions including this one.  h…[Read more]

Dagmar,
Thank you for posting about Kathy’s passing. ALS is a horrible disease as we all know. Kathy and I were able to write and share information about ALS and our lives up until January. She was very kind and supportive when I was diagnosed in December. I will miss her and her input to the ALS online community.

Kathy, rest in peace my friend.…[Read more]

Mike,

Your post brought me to tears. Unfortunately, I’m sure your story sounds all too familiar to many of our pALS.

Thank you for sharing.

Amanda

Katie,

I remember Dagmar commenting (and writing a column) about a similar topic.  It was regarding ALS Awareness Month and being overloaded with information.  Her piece was insightful and showed me a different perspective.  I’ll find it and post a link.

Your points of view, and feelings are understandable.

Do whatever you need to do to be in…[Read more]

@Katie

I absolutely agree!! I think as we learn more and more about the different causes and triggers of ALS “we” will know how to classify and treat cases. We already know that each genetically linked case can not be treated the same way. The Tofersen treatment for the SOD1 mutation will not fix what is wrong in other mutations that lead to ALS.…[Read more]

This is interesting. For years I’ve been seeing doctors because of digestive issues and pains in my abdomen and 2 colonoscopies, x-rays, cat scans, fod map diets, food allergies, gluten and all kinds of things over the years has ruled out crohn’s, diverticulitis, colitis and everything else. This is all over a decade!   I had an episode of the c…[Read more]

@Alan, thank you! I agree with Groucho!

I think it is important that we all continue to advocate in our own way. I know that many people aren’t comfortable being the center of attention, or speaking loudly on any topic. There are many, many ways we can all contribute to awareness and raise funds.

Mark, that would be amazing!! I do believe they are getting closer and closer in regards to gene therapy.
Amanda

@Micheal,
You pose a great topic and one of interest to many of us on the forums. Over a decade ago when I first started volunteering for ALS medical research due to a large number of family members having ALS, they only knew of one mutated gene, SOD1. Since then, I believe they have identified more than 25 genes with mutations associated with…[Read more]