My 2 Minutes of Fame - What Inspires You? - ALS News Today Forums

Tagged: Advocacy, ALS, ALS advocacy, ALS Awareness, ALS awareness month, ALS clinical trials, ALS cure, ALS research, Genetic disease, living with ALS, Lou Gerhig, medication for ALS, pALS, Qalsody, SOD1, SOD1 mutation, Tofersen, WINK NEWS ALS

Living With ALS

My 2 Minutes of Fame – What Inspires You?

Posted by Amanda on May 11, 2023 at 1:21 pm

This week I was interviewed by WINK News in SWFL for ALS Awareness Month. They are focusing on the treatment, QALSody which was recently approved by the FDA. The medical reporter’s sister-in-law has sporadic ALS and she was so excited to hear about my case and that I will get the treatment.

https://alsnewstoday.com/news/qalsodys-conditional-ok-genetic-cause-als-hailed-new-option/

I am one of the 330 people that this specific treatment should work on and I feel very fortunate and blessed. With that knowledge and hope is this type of guilt, similar to survivor’s guilt I suppose.
I want everyone with ALS to have the same opportunities and possible treatments. This has inspired and motivated me even more, to continue to fight for our entire ALS community until ALS is livable or curable! Since I’ve been given a chance, I want to make the most of my life, regardless of what it looks like, and focus on advocating for

pALS!
What motivates and inspires you?

I’ll put a link to the news story when it airs 🙂

Roman replied 1 year, 5 months ago 3 Members · 2 Replies
2 Replies

Dagmar

Member
May 16, 2023 at 12:00 pm

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

Member
December 19, 2023 at 11:40 pm

Congrstulstions Amanda. I am happy for you.

Log In to Reply

Log in to reply.