Astrid

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

Amanda

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!!

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

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!

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]

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]

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]

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]

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]

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]

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

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]

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

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.