Mandy

@John C.,

That is great news and I think your post was well written! Staying cautiously optimistic is GREAT and I’ll take that kind of feedback from someone involved in the trials. The more I talk the the team at the ALS clinic for the Pre-fALS study I am in I get the same kind of feedback. They are also part of the Tofferson study although I did…[Read more]

Iancu,

You would probably have to have a doctor prescribe the medication.  You likely cannot purchase it across country lines.

Perhaps there is someone on the forums from Canada who can provide you with more information.

My sister arrived this week and we were roaming around South Florida the past four days.  The end of the school year is always crazy, and this year has been no exception. I just finished because my year was so busy it was extended by three weeks.  Some how I missed this news until I popped on to check in. I’ve been popping on to try and keep up t…[Read more]

It’s crack how money drives so much!

Congratulations!!

Mary Kay, we share a birth date!! I turned 55 on Flag Day!

Whoot Whoot!!

My family has the SOD1 mutation which I also inherited. The Pre-fALS study that I participate in also contributes to this study and many of the participants were in the clinical trials. I’ve been told that as soon as I show significant enough symptoms that I will be a candidate. Irom what I’ve read and from what the researchers have told me,…[Read more]

@Kathy,

Your post is touching and expresses raw emotions that I believe most pALS experience and some may have a difficult time discussing. You are brave and your contributions on the forum are insightful. Thank you for being able to express yourself and to encourage others when you can.

Amanda

@Kathy,
That’s a great question!

Michael, (or anyone)
If you ever want to talk about the study just let me know! I’m always open to talking and sharing any information I have. And of course, I’m always eager to learn about what others are learning about too. Team work makes the dream work! I’m just praying that the dreams come true sooner than later.
Amanda

Judy, that’s where I go. Do you see Dr. B?

Kathy and Richard,

You are right, many people do not know about ALS until it impact their life in some way. Unfortunately, I guess that is true with a lot of things that people don’t want to deal with in life. I hope that ALS News Today and our members are helping to contribute to ALS Awareness and actively generating funds for research and…[Read more]

Katie B.
Thank you for sharing that information! I had not heard about “We Are Not Invisible” and it sounds like it is very eye opening. You post helps me to look at things from a different lens, thank you for the additional resources.

Amanda

Thank you Crieghton! You are absolutely correct and I edited my post. 🙂

My grandfather passed from ALS in 1980. He had two sisters that were diagnosed with MS and we later found out it was likely ALS. He also had two brothers that had ALS. All three of his children, including my father, passed from ALS. We have the SOD1 mutation and it appears to be slow progressing. I’ve volunteered for 3 different studies, the last…[Read more]