Hey. Linden Lab. May is ALS Awareness Month

[DiscordicDesire]

Did you know ALS has no effective treatments?

Did you know the prognosis is 100% terminal in every case?

Did you know that the ALS Association struggles to get funding in its own awareness month?

Did you know the ACS receive the majority of non profit funding every month?  

 

How can the ALS community stand a chance when our own awareness month gets denied to us.

 

I am sorry if cancer has affected you,

 

But know this, ALS is a genetic disease,  Every generation has more and more cases, with every passing year.  A way to halt progression must be found before the genetic code spreads too wide.

 

The ALS Assocation's SL group dwindled because no one saw us, and then the members kept dying without hope. 

Feel the horror of that, an SL group shutting down because its members all are dead or too disabled to log in ever again.  too busy dying.

 

But feel free to ignore us, just like everyone else.

 

Why am I cynical?  because us being scrappy underrdog has failed our community.  

The US has known about ALS since Lou Gehrig.   we are nearing a century of cases rising.  The reason of denying research priority rarity no longer valid. 

 

Thanks for reading.  Please do not respond if you only seek to argue.

[Codex Alpha]

May is Mental Health Awareness Month across the United States, and this year, it may be more important than ever to focus on how mental health impacts important areas of our lives. This includes our physical health, how we deal with stress, our relationships with others and how we feel, think and behave.

[DiscordicDesire]

As member of NAMI, that is year-round not just May. there are initiatives to support mental health throughout the year, a number of support phone numbers, and nonprofits supporting mental health throughout nation. I am a member of that community as well, unfortunately for me,

ALS has one organization, oh and the ice bucket trend that already faded from public mind.

That is what I am trying to drive home in minds.   

We are among the most underfunded illness communities, among most unacknowledged

Because of erroneous outdated beliefs about this illness.

[Paulsian]

thank you for posting this information ive seen where residents of sl works with als in world before. some use sl for therapy. um as far as ways to get funding routing funding to a list of organizations is a brilliant idea, I would be more motivated to create art if I could give some to places of interest and when im gone my marketplace will fund all to the orgs. 

something like that totally radical?

[Polenth Yue]

You're likely to get more results from a call for action (this is where you can find out about ALS, this is what we do, this is what you can do to help) rather than what you've said (why are you helping those other people). There's a lot of potential help to go around, but I hadn't heard anything about your group in SL until this post. You're assuming that everyone knows exactly what you mean and then choosing to ignore it, but most people just aren't going to know unless they're told.

[DiscordicDesire]

Polenth, we have been informing for 30 years through countless deaths and we cannot penetrate consciousness.  we are deliberately ignored in the US.  I am at year 2 almost and time already running out after year 2.  I will die before I see meaningful change.   Let that sink in.

[Rowan Amore]

https://www.als.org

[Coffee Pancake]

I would very much like to see @Linden Lab @Strawberry Linden hang a regular ongoing lantern on this.

Second Life provides a critically important service to a great many people with a wide rage of disabilities and heath issues.

These are the kind of resident profiles we want to see, these are the ones that actually matter.

[Akane Nacht]

I'm sure people are not deliberately ignoring any group, as others have pointed out. It's just that diseases that have touched us personally get more of our attention. My paternal grandmother died of ALS. Our family had little to no knowledge of it before her diagnosis.

I still take note when i read of new research in this area:

FDA Approves Oral Drug for ALS: Why It's Important (healthline.com) (from a few days ago)

Singapore scientists further unravel ALS mystery in groundbreaking new work | Healthcare Asia Magazine (not very new, but important)

I also think it would be good to see more groups/residents profiled who work towards raising awareness of various disability/health matters. It's not always easy to find via inworld search as many groups are no longer active. 

[DiscordicDesire]

Akane it took two years for FDA to decide.  the structure of FDA does not understand how aggressive this disease is.   it approved due to pressure from ACT for ALS legislation. scores upon scores upon scores died sooner than needed  even so unless drugged fully cleared, insurance wont cover it.  It is horror compounded upon horror.  FDA has previously refused to acknowledge the work of the ROAR team because they operate out of Saudi Arabia.  Politics is played with valuable metanalysis.   

 

This is why I am a Fury.  This is why I am a Valkyrie.   The injustice, the lack of equitable action.   Reading the stories of those that fell before me, and knowing that I will leave wreckage when I pass.

[bigmoe Whitfield]

I've got a friend that ended up with ALS when he turned 27,  he's been fully taken over by it, but he's still alive,  he's now almost 50 years old,  I wish ALS/MS/ect was things that never existed.

[Alwin Alcott]

9 hours ago, DiscordicDesire said:

But feel free to ignore us, just like everyone else.

As your tone is very friendly  mine won't be worse.

To this quote, yes many will.
BUT not because "we" ignore you, but because you rant to a international community about a USA issue.
"everyone else" as you call it, funds other national funds and organisations allover the world.

It should not always be about the USA.

[Akane Nacht]

47 minutes ago, DiscordicDesire said:

Akane it took two years for FDA to decide.  the structure of FDA does not understand how aggressive this disease is.   it approved due to pressure from ACT for ALS legislation. scores upon scores upon scores died sooner than needed  even so unless drugged fully cleared, insurance wont cover it.  It is horror compounded upon horror.  FDA has previously refused to acknowledge the work of the ROAR team because they operate out of Saudi Arabia.  Politics is played with valuable metanalysis.   

 

This is why I am a Fury.  This is why I am a Valkyrie.   The injustice, the lack of equitable action.   Reading the stories of those that fell before me, and knowing that I will leave wreckage when I pass.

I don't know anything about how the FDA works, nor am I American or have any intimate knowledge of American politics with regard to medical research (though of course an incredible amount of medical research comes from American institutions which benefits the world, and we hope that continues).

I'm sorry about your situation, and hope you find the support you need.  

[Polenth Yue]

4 hours ago, DiscordicDesire said:

Polenth, we have been informing for 30 years through countless deaths and we cannot penetrate consciousness.  we are deliberately ignored in the US.  I am at year 2 almost and time already running out after year 2.  I will die before I see meaningful change.   Let that sink in.

Do you want general emotional support or do you want solutions to the problem of getting your group noticed in Second Life? I interpreted it as you wanting help getting your group noticed, so I responded to that. If it's general emotional support you want, I am not the person for that and will leave the conversation. Others are better suited to that role. But if you do want ideas for what can be done to help promote your group in Second Life, I can offer some suggestions, as can others.

[Max Quirky]

I have not resorted to using any search engine to lookup anything mentioned in this thread and so I'd like to make a suggestion.

Please do not only use acronyms - use the full name of something then put the acronym in brackets and then feel free to use the acronym in that text from then on.

I have no idea what you mean by ALS and I am sure many other are in the same boat.

[bigmoe Whitfield]

44 minutes ago, Max Quirky said:

I have not resorted to using any search engine to lookup anything mentioned in this thread and so I'd like to make a suggestion.

Please do not only use acronyms - use the full name of something then put the acronym in brackets and then feel free to use the acronym in that text from then on.

I have no idea what you mean by ALS and I am sure many other are in the same boat.

google will help explain what ALS is.  you should look it up. really...

[Garnet Psaltery]

I am sorry to hear of your suffering and that of others with Amyotrophic Lateral Sclerosis.  I agree with @Coffee Pancake that Linden Lab could do more to highlight such issues.

[Claireschen Hesten]

7 hours ago, Max Quirky said:

I have no idea what you mean by ALS and I am sure many other are in the same boat.

As said a quick search will tell you what it means. i had check it myself as it's not a term we use in the UK but we would know it as Motor neuron disease 

[Arielle Popstar]

 I'm more familiar with it as Lou Gehrig's disease.

[Lindal Kidd]

From Wikipedia, for those wondering:

Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig's disease, is a neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most common type of motor neuron disease. Early symptoms of ALS include stiff muscles, muscle twitches, and gradual increasing weakness and muscle wasting.^]Limb-onset ALS begins with weakness in the arms or legs, while bulbar-onset ALS begins with difficulty speaking or swallowing. Half of the people with ALS develop at least mild difficulties with thinking and behavior, and about 15% develop frontotemporal dementia. Most people experience pain. The affected muscles are responsible for chewing food, speaking, and walking. Motor neuron loss continues until the ability to eat, speak, move, and finally the ability to breathe is lost. ALS eventually causes paralysis and early death, usually from respiratory failure.

The late physicist Stephen Hawking suffered from ALS. He survived for 55 years with the disease, largely because his fame and wealth allowed him to receive extraordinary care measures.

Edited May 23, 2022 by Lindal Kidd

[Maryanne Solo]

Oh wow that is > M.N.D < in Australia.
I will assist in raising it's profile once my RL business is fully up and running.
I have witnessed MND in action and owe it to my friend to do what I can.
Steven - never forgotten, always in our hearts. ❤️