ALS News Today Forums » All Posts https://alsnewstoday.com/forums/forums/forum/boosting-our-voices/als-advocacy-and-awareness/feed/ Fri, 24 May 2024 04:28:18 -0500 http://bbpress.org/?v=2.5.14-6684 en-US https://alsnewstoday.com/forums/forums/topic/more-treatments-vs-improved-quality-of-life/#post-25319 <![CDATA[Reply To: More Treatments vs. Improved Quality of Life?]]> https://alsnewstoday.com/forums/forums/topic/more-treatments-vs-improved-quality-of-life/#post-25319 Mon, 11 Mar 2024 17:55:37 +0000 Amanda <div>
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Finding better medications & treatments for ALS is the priority to me!! ALS was identified in 1869 by French neurologist Jean-Martin Charcot. In 1939 the disease gained recognition when t ended the career of one of baseball’s most beloved players, Lou Gehrig. So, in 154 years very little progress has been made, at least until recently. And the latest breakthroughs only help a small number of people in the ALS population.

I’m on tofersen, a treatment for SOD1 ALS. I’m one of the lucky 300+ people in the US that can benefit from this treatment. It shouldn’t be this way! There should be more treatments (not just meds that extend life by months) that make a real difference for more pALS. We need the research to target cures and effective life extending (quality life) treatments. Research is where I strongly believe the money should go.

I’ll get off my soap box now 🙂

Amanda

]]> https://alsnewstoday.com/forums/forums/topic/more-treatments-vs-improved-quality-of-life/#post-25317 <![CDATA[Reply To: More Treatments vs. Improved Quality of Life?]]> https://alsnewstoday.com/forums/forums/topic/more-treatments-vs-improved-quality-of-life/#post-25317 Mon, 11 Mar 2024 17:19:20 +0000 Dagmar As a pALS who’s lived with ALS for 14 years – – I vote “more & better treatments and even (gasp!) a cure.

We have enough walkers, rollators, power chairs, respiratory devices, feeding tubes, and eye gaze devices. How about something that eliminates the need for these entirely? While I’m on my soapbox 😉 I haven’t seen any improvements in feeding tubes, eye-gaze devices, or BPAPs. Still the same as 10 yrs. ago. So, let’s focus on the cause of ALS and the cure.

]]> https://alsnewstoday.com/forums/forums/topic/more-treatments-vs-improved-quality-of-life/#post-25259 <![CDATA[More Treatments vs. Improved Quality of Life?]]> https://alsnewstoday.com/forums/forums/topic/more-treatments-vs-improved-quality-of-life/#post-25259 Tue, 05 Mar 2024 07:01:50 +0000 Dagmar If you were in charge of unlimited funds and had to decide on only one investment, which would you dedicate the money to?

  1. Finding better medications & treatments for ALS. 
  2. Creating things that improve the quality of life for ALS patients. 

And, tell us why you chose A or B.

]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25256 <![CDATA[Reply To: Do you know what Rare Disease Day is?]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25256 Thu, 22 Feb 2024 17:16:54 +0000 Dagmar Maybe new ALS patients feel so overwhelmed with ALS information that they overlook what the Rare Disease advocacy is doing to help ALS. ??

]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25254 <![CDATA[Reply To: Do you know what Rare Disease Day is?]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25254 Wed, 21 Feb 2024 14:17:34 +0000 Amanda Dagmar,

I was noticing the same thing, and having some of the same questions. I know ALS is rare, and each case is rare too. Between sporadic ALS, all the different genetic mutations and variants of each, Bulbar onset, limb onset — Are we so rare that our community does not see the value in Rare Disease Day?

Community members – what do you think?

Newer members, did you know that Rare Disease Day existed before this post?

]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25249 <![CDATA[Reply To: Do you know what Rare Disease Day is?]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25249 Tue, 20 Feb 2024 17:43:52 +0000 Dagmar I am amazed (although maybe not surprised) by how little promotion of Rare Disease Day I see on ALS social media. RDD is Feb. 29th. BTW
I wonder if it just doesn’t have visibility yet, or ALS community doesn’t see the value, or people don’t understand what it is???

What do you think of Rare Disease Day?

]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25226 <![CDATA[Reply To: Do you know what Rare Disease Day is?]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25226 Tue, 13 Feb 2024 17:36:53 +0000 Dagmar Rare Disease Day may be a new event to newly diagnosed ALS patients. They might even ask, “Why should I care?” Well, I’ve learned it matters a lot for us – – we gain more visibility, advocacy, and funding. I wrote a short piece about this annual event here: https://alsnewstoday.com/columns/landscape-als-patients-has-changed-over-years/

Feb. 29th – – wear your purple, pink,, and green… or show your stripes… whatever,…just help celebrate the day!

]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25194 <![CDATA[Do you know what Rare Disease Day is?]]> https://alsnewstoday.com/forums/forums/topic/do-you-know-what-rare-disease-day-is/#post-25194 Fri, 09 Feb 2024 14:19:55 +0000 Amanda What do you think Rare Disease Day is?  Do you plan on participating? How can recognition days like this make a difference?

]]> https://alsnewstoday.com/forums/forums/topic/is-als-awareness-starting-to-fade/#post-24637 <![CDATA[Reply To: Is ALS awareness starting to fade?]]> https://alsnewstoday.com/forums/forums/topic/is-als-awareness-starting-to-fade/#post-24637 Thu, 21 Sep 2023 12:48:19 +0000 Edward Joseph Mytych I “THINK” awareness is still going strong….
https://www.theverge.com/2023/9/19/23880861/neuralink-human-clinical-trial-n1-implant

theverge.com

Neuralink is recruiting subjects for the first human trial of its brain-computer interface

Neuralink plans for the study to take six years and wants to test every part of its system — including the robot used to implant it.

]]> https://alsnewstoday.com/forums/forums/topic/is-als-awareness-starting-to-fade/#post-24622 <![CDATA[Is ALS awareness starting to fade?]]> https://alsnewstoday.com/forums/forums/topic/is-als-awareness-starting-to-fade/#post-24622 Tue, 19 Sep 2023 06:01:03 +0000 Dagmar ALS awareness activities have been happening all through spring and summer. But now that fall is here, is the push for ALS awareness starting to fade?

What are your suggestions for awareness activities that would be good during the fall and winter months? Are activities and events still happening where you live? Tell us about them

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