Astrid

Each day Dagmar, Kevin and I check to see if we have any new member request. We work hard to make sure spammers and others with undesirable motives aren’t permitted into our online community. The number of spammers registering is staggering. What in the world are people thinking??? We want to make sure that our online community is made up of…[Read more]

For many pALS, the first time they heard of ALS was from their doctor while they were getting diagnosed with ALS. For me, I heard about it when I was 11, and my grandfather was diagnosed. I was young, admired my grandpa, and I was absolutely clueless how those three letters would impact my life.

When was the first time you heard of ALS. Was…[Read more]

Good morning ALS News Today Forum Members,

As many of you know I am a school psychologist by day, and moderator by evening :). I started working with BioNews about 2 and half years ago. When Dagmar and I started we were told that we just need to welcome new members, and post a few topics each week and monitor the forum. Simple right? Well, this…[Read more]

Talking about end of life topics such as medical care, hospice, wills etc. are all tough to discuss, but much needed for everyone. People with and without ALS need to be prepared for the end of life. We need give considerations to wills, who will make medical decisions on our behalf and how and where we choose to live our final days.

What…[Read more]

I was searching the internet looking for celebrities’ that have a connection to ALS. I thought if we reached out to them and invited them to participate in ALS Awareness month or Rare Disease Day 2022, we might be able to generate some more publicity.

In my search I came across this…[Read more]

Do you think advocating for pALS can be helpful? Are you involved in advocacy? How did you get involved? What do you do? How does being an advocate make you feel? What changes do you think are the most beneficial for pALS?

As a caregiver your life is busy and often times you have little time to take care of yourself? Is there someone or something that motivates you or inspires you? How do you manage all of your responsibilities and stress?

Hello pALS and pre-fALS members! Lets post some updates about the study, research and clinical trials you are in. What are you involved with (which trial/study), What have you learned? How do you feel? Would you recommend this to other pALS? What was the selection criteria?

Please share you experiences and keep us updated!

How are our pALS’ cargo bees doing this summer?