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Amanda replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month, 1 week ago

Saturday, April 16, 2022
Support Team Gleason’s 2022 Crescent City Classic Team!

IN-PERSON OR VIRTUAL 10K Run/Walk
Support Team Gleason’s 2022 Caesars Sportsbook Crescent City Classic Team!

Each year, runners/walkers/joggers/rollers like you have signed up to help raise needed funds for Team Gleason. We hope you’ll support our team and help…[Read more]

Amanda replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month, 1 week ago

On May 14th we have an ALS Walk to Defeat ALS in Estero Florida.

Amanda

Amanda replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month, 1 week ago

Dagmar,
I love this idea! Let us all focus on what IS happening around us that is shining a light on ALS. Also, what are we going to do to get involved? There are so many things that pALS and cALS (and all of our friends) can do to advocate and raise awareness!!

Amanda replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 1 month, 1 week ago

John,

I’m so sorry for all of your losses. ALS is devastating, and it looks like your family may have a genetic predisposition. That also carries a heavy weight to bear. You have my deepest condolences.

Amanda

Dagmar Munn replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month, 1 week ago

Meanwhile, in Arizona…. there’s the second annual Hike for Hope!

What is the Hike for Hope?
Throughout the first two weeks of May, you are encouraged to hike anytime, anywhere, to raise awareness and donations to support Arizona families living with ALS. You don’t need to live in Arizona to participate in this event! Once you are registered o…[Read more]

Dagmar Munn replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month, 1 week ago

Challenge Seeks to Raise $50K in 50 Days to Support ALS Research – – The 50for50 challenge invites people to set a personal goal related to the https://alsnewstoday.com/news-posts/2022/04/08/als-research-key-50k-50-days-fundraising-effort/
Everything such as 50 pushups a day or 50 acts of kindness. Participants are also encouraged to set a…[Read more]

Dagmar Munn started the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month, 1 week ago

Cue the balloons and raise the banners!

In-person ALS awareness and fundraising events are back this year! But so are online events and special donation-for-a-purchase offers from many businesses.

Let’s create a collection of national, local, and even international ALS awareness events. You can share these with family and friends when t…[Read more]

Amanda started the topic What are you Doing for ALS Awareness Month May 2022? in the forum ALS Awareness Month 1 month, 2 weeks ago

I just started a team for the May 14th ALS Walk to Defeat ALS in Estero Florida. I’m excited because this is the first time since the pandemic started that I’ve been able to coordinate a team for the walk. I moved to SWFL just before the pandemic started. It looks like about 10 of my coworkers and friends (so far) are joining me. If you are…[Read more]

Dagmar Munn replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 month, 2 weeks ago

Wow – – things are moving along Lisa! Can’t wait to read about your experiences from the actual filming. Good luck – have fun! Thanks for the updates 🙂

Amanda replied to the topic ALS Awareness Month- May 2022 in the forum ALS Awareness Month 1 month, 3 weeks ago

Kathy,

You asked me about this in our message and I forgot to respond!! I’m so sorry. Dagmar and I have been communicating but our plans are not concrete yet. As soon as things are set in stone we will make an announcement!

Amanda replied to the topic What's the latest news on AMX0035? in the forum Research Topics 1 month, 3 weeks ago

Duane,

I understand your opinion and your post response. My father felt similarly regarding ALS treatments. He did not want to live longer because of his quality of life being poor in his opinion. He did not seek medical attention or take anything to address ALS or any of the symptoms. The only time he accepted medical assistance was when he…[Read more]

Dagmar Munn replied to the topic CLENBUTEROL in the forum Research Topics 1 month, 3 weeks ago

Hi Mary, Sorry I didn’t catch your message earlier in this discussion thread 🙂 Explain to me a little more what you mean by “rehab program?” I’m happy to answer any questions you may have. Dagmar

Dagmar Munn replied to the topic What's the latest news on AMX0035? in the forum Research Topics 1 month, 3 weeks ago

4/1/2022

Trial Data Not Enough for AMX0035 Approval, FDA Committee Votes – – read article here: https://alsnewstoday.com/news-posts/2022/04/01/fda-committee-votes-against-recommending-als-therapy-amx0035/

Message from the ALS Association:

The Institute for Clinical and Economic Review (ICER) is reviewing Amylyx Pharmaceutical’s AMX0035 and M…[Read more]

Dagmar Munn replied to the topic If I could transform healthcare organizations. I’d change… in the forum Living With ALS 1 month, 3 weeks ago

Reading through the comments I am getting on the article’s site, many of us are frustrated with having to deal with healthcare organizations.

Who Is Protecting Whom?

I’ll take advantage of this lull in the conversation 😉 to add 3 more wishes:

1. When calling a healthcare…[Read more]

Dagmar Munn started the topic If I could transform healthcare organizations. I’d change… in the forum Living With ALS 1 month, 4 weeks ago

Who hasn’t gotten lost in healthcare’s layers of bureaucracy? Or, wondered why childproof medication caps are used for pill bottles issued to ALS patients?

I wrote about my experiences in my recent column, “Who is Protecting Whom?” https://alsnewstoday.com/columns/2022/03/29/supposed-protections-harm-rare-disease-patients/
The incident left me…[Read more]

Amanda started the topic How to be a supportive friend to a pALS or a caregiver in the forum ALS and Relationships 2 months ago

I remember when many of my father’s friends found out that he had ALS they had no idea how to respond. Of course, at that time I had little empathy for them and in fact their lack of friendship kind of ticked me off. After years and years of my dad being there for them, showing up when times were tough, pulling their vehicles out of ditches d…[Read more]

Amanda started the topic Is There Such a Thing as Too Much Information? in the forum Living With ALS 2 months ago

When I first learned just how prevalent ALS was in my family, I read everything I could about ALS. At that time, in the early 2000s, there really wasn’t that much information available. I went through phases where I needed to stop and not think about ALS, or the possibility of having ALS in the future. With a familial history like mine, that…[Read more]

Amanda started the topic Where do you start? in the forum Diagnosis Information and General Questions 2 months ago

Have you ever googled “What kind of doctor do you see if you think you have ALS?” We all know how this process goes — long. The results were something like this, “Your first step is a full exam by a neurologist. This is a doctor who specializes in disorders of the nervous system, including your brain and spinal cord. This exam will include l…[Read more]

Amanda replied to the topic Is Amazon’s “Solos” a good example that ALS recognition Is growing in Hollywood? in the forum ALS In The Media 2 months ago

I think it is interesting to hear different people’s approaches to life, including what they choose to watch and how they choose to spend their time. Yes, their Precious time! There is no right or wrong answer. As Dagmar always advocates, we must take care of our own mental health. We know ourselves best, and what serves our minds and bodies best.…[Read more]