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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 1 month, 3 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]

Amanda started the topic Is There Such a Thing as Too Much Information? in the forum Living With ALS 1 month, 3 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]

Amanda started the topic Where do you start? in the forum Diagnosis Information and General Questions 1 month, 4 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]

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 1 month, 4 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]

Amanda replied to the topic Global Forums in the forum Using our Forums 2 months, 1 week 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 2 months, 1 week 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 2 months, 1 week 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 2 months, 1 week 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]

Amanda replied to the topic Neurofilament testing for diagnosing. in the forum Diagnosis Information and General Questions 2 months, 1 week 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 2 months, 2 weeks 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

Amanda replied to the topic ALS Gene in the forum Diagnosis Information and General Questions 2 months, 2 weeks 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 2 months, 2 weeks 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

Amanda replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 2 months, 4 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.

Amanda replied to the topic What does Advocacy and Awareness mean to you? in the forum ALS Awareness and Advocacy 2 months, 4 weeks ago

That’s what you posted last year Richard. Hopefully this year we will see more about ALS awareness month. We can surely get involved with your suggestions.

Amanda started the topic What does Advocacy and Awareness mean to you? in the forum ALS Awareness and Advocacy 3 months ago

When it comes to events such as Rare Disease Day and ALS Awareness Month are you invested? Are those events that you desire to get involved in? Why or why not? Do you believe that they are beneficial and if so, in what ways?

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 3 months ago

Thank you so much!! You are awesome!!

Amanda

Amanda started the topic About The Moderators in the forum Using our Forums 3 months, 1 week ago

Good morning,

Many of you have been a part of our online community for several years and have gotten to know Dagmar and myself. I thought I would give you a little background information. Dagmar and I live in different parts of the country and we communicate often via chat, email and social media. We both have different experiences with ALS an…[Read more]

Amanda replied to the topic You're Not You in the forum ALS In The Media 3 months, 1 week ago

Dagmar,

You are right!! I would imagine that many people with ALS, and other illness fall into a similar pattern of guilt and family and friends not understanding or supporting. In many ways I’ve seen many of my own relatives do the same thing!

This movie does highlight the need for things like Rare Disease Day and ALS Awareness Month!! We…[Read more]

Amanda replied to the topic In Memory of My Cousin Bruce in the forum In Loving Memory 3 months, 1 week ago

Thank you. I really wasn’t expecting so much support. You will never know how deeply you have all touched my heart.

Amanda