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Dagmar Munn started the topic ALS Community Spotlight: "To families affected by ALS, Hope Loves Company offers hope, support” in the forum ALS Awareness Month 4 days, 5 hours ago
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ALSSpotlight, or read the full series here…[Read more]
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Dagmar Munn replied to the topic The next Step in the forum Living With ALS 4 days, 5 hours ago
Congratulations on jumping through all the hoops to be able to take Tofersen! And, your recent interview was fabulous!
Cape Coral woman with genetic ALS to test newly approved drug
I’ve been taking Riluzole for 13 yrs now and here are my thoughts: taking it during or immediately following a meal gives me…[Read more]
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Dagmar Munn replied to the topic QALSody in the forum ALS In The Media 4 days, 5 hours ago
That was a great interview Amanda! Thank you for helping to raise awareness of ALS. I’m so happy for you that you are approved for the new treatment.
(your tattoo looked pretty nifty too!!)
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Amanda started the topic QALSody in the forum ALS In The Media 4 days, 21 hours ago
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Dagmar Munn replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 5 days, 6 hours ago
Hello Forum Members – – – these are all great tips! But I’m sure you all have more to share. Let’s fill this discussion topic with all your advice for other pALS and cALS. Here’s a recap of the request:
What are some of your tips, advice, or general words of wisdom or inspiration for other members of the ALS community? Maybe it’s something y…[Read more]
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Dagmar Munn replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 5 days, 6 hours ago
My tip: When at ALS Clinic appointments always listen, bring along an open mind and a positive attitude. Don’t be afraid to ask lots of questions such as, “What do you suggest I do to maintain where I am right now?” and write down everything so you can follow up at home.
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Dagmar Munn replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 5 days, 6 hours ago
Svarog, that is an impressive collection of charts! Are you the sole creator, or is this a collaboration?
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Dagmar Munn replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 5 days, 6 hours ago
Maryann, I’m curious… did you encounter any difficulty in having your health insurance pay for you to take all 3 Rs? ( riluzole, radicava and relyvrio)
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Amanda replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 5 days, 7 hours ago
Maryann, I’m sorry. I miss read the “who” part.
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Amanda started the topic The next Step in the forum Living With ALS 5 days, 10 hours ago
Thursday afternoon I received a text from the U of Miami team asking if I could be there on Friday. I responded, “Absolutely” and went home and packed an overnight bag. A little of the back story .. I have been participating in the Pre-fALS study since 2010ish. On December 2nd, they confirmed I had SOD1 ALS. At that time they expected QALSody…[Read more]
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Amanda replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 5 days, 11 hours ago
@L Hagman,
That’s great news! Please let us know how you are doing and what you think of the trial.
Amanda -
Amanda started the topic ALS TRIVIA – – "ALS Association" – – Did you know? in the forum ALS Awareness Month 5 days, 16 hours ago
Did you know that the ALS association is just 38 years old? It was created through a merger of the ALS Society of America and the National ALS Foundation and supports every state in the United States. Other countries also have chapters.
What other organizations do you recommend to help pALS and their families?
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Dagmar Munn started the topic ALS Community Spotlight: "Living with ALS has brought many changes, but we ‘keep on keepin’ on’” in the forum ALS Awareness Month 1 week, 2 days ago
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ALSSpotlight, or read the full series h…[Read more]
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Dagmar Munn replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 1 week, 4 days ago
These are thoughtful and practical. Thank you for sharing them Mary Jo.
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Dagmar Munn replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 1 week, 4 days ago
Another great tip! Thank you Lorraine.
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Dagmar Munn replied to the topic Your tips, advice, and words of wisdom for others in the ALS community in the forum Living With ALS 1 week, 4 days ago
Great tips JT!
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Dagmar Munn replied to the topic My 2 Minutes of Fame – What Inspires You? in the forum Living With ALS 1 week, 4 days ago
Congratulations Amanda on your big media interview! We all look forward to your post when it goes live! 🙂
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Dagmar Munn replied to the topic Increase awareness of ALS by getting a temporary tattoo (oh my!) in the forum ALS Awareness Month 1 week, 4 days ago
That is wonderful Alan! Thank you for helping to raise ALS awareness!
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Dagmar Munn replied to the topic ALS TRIVIA – – "ALS Has Many Names" Did you Know? in the forum ALS Awareness Month 1 week, 4 days ago
Thank you for posting this one Amanda! Too many names? This is a topic I feel strongly about. Here are some excerpts from a column I wrote on this very issue:
“…the disease goes by three names! …every news item, press release, or research article has to state ALS … or MND …, also known as Lou Gehrig’s disease, before diving into the a…[Read more]
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Amanda replied to the topic BodyScience Miami – Treating the cause not the symptoms in the forum Research Topics 1 week, 5 days ago
Mel,
I think there should be a standard and protocol for diagnosis. I think if you have insurance, the insurance company would require specific requirements. I hope you have success and feel and improvements.
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