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Hello Wonderful Community!!

Just a quick reminder to keep the community standards in mind when making posts and comments. We want to make sure that everyone feels like they have a safe place to discuss ALS related concerns and to ask ALS related questions.

If you need help or have questions don’t hesitate to reach out to myself or Dagmar! We…[Read more]

Welcome to 2022!! Our online community continues to grow. We’ve had many members participating since we launched several years ago, and each month we continue to grow. Our members are kind, thoughtful, supportive, inspiring and optimistic! Not to mention they are filled with knowledge and tips that can be shared to help others.

What kind of…[Read more]

As caregivers it easy to forget to take care of yourself. At times, I don’t think we just “forget,” I think we simply believe we don’t have time. Taking car of our pALS along with family, home and work responsibilities there just aren’t enough hours in the day. What can & will you try to do differently in 2022 in order to take care of yourse…[Read more]

As ALS progresses how do you address the changes in your relationship? Are you able to have open and honest conversations about how to address needs and concerns or are those conversations challenging? Do you get a lot of support from family members and friends?

As the 2021 Holiday Season continues, how are you preparing? Has having a pALS changed your approach to the holiday season? What will you do differently this year?

Amanda

On 11/26, WHO stated, “On 26 November 2021, WHO designated the variant B.1.1.529 a variant of concern, named Omicron, on the advice of WHO’s Technical Advisory Group on Virus Evolution (TAG-VE). This decision was based on the evidence presented to the TAG-VE that Omicron has several mutations that may have an impact on how it behaves, for e…[Read more]

Good morning (Florida time) Community,

I think the ALS clinics around the world are up and resuming semi-normal or new normal operations because are community is continuing to grow. It saddens be to know that more and more people continue to be diagnosed with ALS; however, I’m sure they will find support and comfort in our tight knit, warm and…[Read more]

Happy Thanksgiving to all of our members that live in the United States. I hope you have a peaceful and joyful holiday.

Amanda

The holidays are fast approaching and we all need to be prepared mentally. We’ve had a heck of a couple of years. Our community is not only dealing with the pandemic, but we also have to adjust to the changes that ALS brings into our lives. Regardless if you area a pALS, caregiver, child of a pALS, ALS continues to bring about changes. Some of…[Read more]

There are research opportunities at the University of Miami for pALS and for pre-symptomatic fALS. I thought I would share the link to their page.

Research

Just being diagnosed with ALS is overwhelming! There are so many things to think about and preparations that need to be made. To complicate things even further, ALS effects each person differently, so knowing exactly what you will need is challenging. Some pALS with limb onset may need to make changes to their homes in order to be independent…[Read more]