Kathryn F. Kennedy

Congratulations on jumping through all the hoops to be able to take Tofersen! And, your recent interview was fabulous!

Cape Coral woman with genetic ALS to test newly approved drug

I’ve been taking Riluzole for 13 yrs now and here are my thoughts: taking it during or immediately following a meal gives me…[Read more]

That was a great interview Amanda! Thank you for helping to raise awareness of ALS. I’m so happy for you that you are approved for the new treatment.

(your tattoo looked pretty nifty too!!)

Hello Forum Members – – – these are all great tips! But I’m sure you all have more to share. Let’s fill this discussion topic with all your advice for other pALS and cALS. Here’s a recap of the request:

What are some of your tips, advice, or general words of wisdom or inspiration for other members of the ALS community? Maybe it’s something y…[Read more]

My tip: When at ALS Clinic appointments always listen, bring along an open mind and a positive attitude. Don’t be afraid to ask lots of questions such as, “What do you suggest I do to maintain where I am right now?” and write down everything so you can follow up at home.

Svarog, that is an impressive collection of charts! Are you the sole creator, or is this a collaboration?

Maryann, I’m curious… did you encounter any difficulty in having your health insurance pay for you to take all 3 Rs? ( riluzole, radicava and relyvrio)

Maryann, I’m sorry. I miss read the “who” part.

@L Hagman,
That’s great news! Please let us know how you are doing and what you think of the trial.
Amanda

These are thoughtful and practical. Thank you for sharing them Mary Jo.

Another great tip! Thank you Lorraine.

Great tips JT!

Congratulations Amanda on your big media interview! We all look forward to your post when it goes live! 🙂

That is wonderful Alan! Thank you for helping to raise ALS awareness!

Thank you for posting this one Amanda! Too many names? This is a topic I feel strongly about. Here are some excerpts from a column I wrote on this very issue:

“…the disease goes by three names! …every news item, press release, or research article has to state ALS … or MND …, also known as Lou Gehrig’s disease, before diving into the a…[Read more]

Mel,
I think there should be a standard and protocol for diagnosis. I think if you have insurance, the insurance company would require specific requirements. I hope you have success and feel and improvements.
Amanda