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Amanda replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 3 months, 3 weeks ago
On May 14th we have an ALS Walk to Defeat ALS in Estero Florida.
Amanda
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Amanda replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 3 months, 3 weeks 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 3 months, 3 weeks 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
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Amanda started the topic What are you Doing for ALS Awareness Month May 2022? in the forum ALS Awareness Month 4 months 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]
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Amanda replied to the topic ALS Awareness Month- May 2022 in the forum ALS Awareness Month 4 months, 1 week 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!
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Amanda replied to the topic What's the latest news on AMX0035? in the forum Research Topics 4 months, 1 week 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]
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Amanda started the topic How to be a supportive friend to a pALS or a caregiver in the forum ALS and Relationships 4 months, 2 weeks 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]
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Amanda started the topic Is There Such a Thing as Too Much Information? in the forum Living With ALS 4 months, 2 weeks 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]
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Amanda started the topic Where do you start? in the forum Diagnosis Information and General Questions 4 months, 3 weeks 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]
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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 4 months, 3 weeks 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]
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Amanda replied to the topic Global Forums in the forum Using our Forums 5 months ago
Hola, todos –
¡Tenga en cuenta que nuestro foro da la bienvenida a
miembros de todo el mundo! Al igual que ALS, no discriminamos.
Con eso en mente, es posible que deba usar un traductor en línea a
veces para leer o publicar una respuesta. Recomendamos encarecidamente a
todos que se abracen unos a otros en nuestra comunidad. El inglés es
el…[Read more] -
Amanda replied to the topic Global Forums in the forum Using our Forums 5 months ago
Hola, todos –
¡Tenga en cuenta que nuestro foro da la bienvenida a
miembros de todo el mundo! Al igual que ALS, no discriminamos.
Con eso en mente, es posible que deba usar un traductor en línea a
veces para leer o publicar una respuesta. Recomendamos encarecidamente a
todos que se abracen unos a otros en nuestra comunidad. El inglés es
el…[Read more] -
Amanda replied to the topic Global Forums in the forum Using our Forums 5 months ago
Witam wszystkich –
Pamiętaj, że nasze forum wita członków z całego świata!
Podobnie jak ALS, nie dyskryminujemy. Mając to na uwadze,
może być konieczne skorzystanie z tłumacza online, aby przeczytać
lub opublikować odpowiedź. Gorąco zachęcamy wszystkich do wzajemnego
objęcia się w naszej społeczności. Angielski jest najczęściej używan…[Read more] -
Amanda started the topic Global Forums in the forum Using our Forums 5 months ago
Hello Everyone –
Please Keep in mind that our forum welcome members from around the world! Like ALS, we do not discriminate. With that in mind, you may have to use an online translator at times to read or post a reply. We strongly encourage everyone to embrace each other in our community. English is the most common language we read in our posts,…[Read more]
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Amanda replied to the topic Neurofilament testing for diagnosing. in the forum Diagnosis Information and General Questions 5 months ago
Carol,
I know that in the pre-fALS (pre-familial ALS) study that I volunteer for at the University of Miami they are using this test for one of their clinical trials. It is very exciting although research takes a long time before it makes its way into our world as a viable treatment. They have narrowed down candidates to specific mutations in the…[Read more] -
Amanda replied to the topic ALS Gene in the forum Diagnosis Information and General Questions 5 months, 1 week ago
Christa,
My reply is open to you and anyone else interested in the pre-fALS study. I’ve posted information about it on the forums before. You should be able to find it using the search tool too. I’m always willing to talk or message about the program if anyone is interested. Anything to help!!
Amanda
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Amanda replied to the topic ALS Gene in the forum Diagnosis Information and General Questions 5 months, 1 week ago
Dr. Bernie,
Hello , there are many types of genetic mutations that can be inherited. Has your son been tested for those mutations? That would be the first step. There is a 50% step that he inherited the mutation. Even if he inherited the mutation that does not guarantee he will get ALS, that means he has a higher risk of getting ALS. There…[Read more] -
Amanda replied to the topic Young man with suspected bulbar ALS – what on earth should I do now? in the forum Diagnosis Information and General Questions 5 months, 1 week ago
Marcie,
I’m so sorry to hear about your daughter. I can only imagine your heartbreak. She was so young. It is very kind of you to share information on the forums and we appreciate your contributions.
Amanda
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Amanda and
Lyle Davis are now friends 5 months, 1 week ago
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Amanda replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 5 months, 3 weeks ago
LISA!!! CONGRATULATIONS!!! Now I know a real star 🙂 I can’t wait to hear all about your experiences. Please keep us posted. This is so exciting.
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