kay2017
Member
- Joined
- Feb 15, 2017
- Messages
- 10
- Reason
- Learn about ALS
- Country
- UK
- State
- London
- City
- london
Dear all,
My name is Kay and I'm based in London. I am not an ALS sufferer but I found out about this disease by Anthony Carbajal's campaign to raise awareness about it. Most watch and even participate in the ALS ice bucket challenge but didn't take the time to actually understand the gravity of ALS. For some reason, just reading about ALS sufferers, their stories, life changes and the possibly inevitable, I feel compelled to come here and offer whatever moral support I can. I can't move on. I am also speaking to my co founders (we run a small technology company) to start to dedicate a certain % of our profits to sufferers if it means they can prolong their life longer. Every company that is profitable, should contribute a small percentage (discretionary) to the eradication of rare diseases, in my view.
Please if I am in the wrong place, I am so sorry I do not mean to intrude or say anything untoward but I need to get something off my heart.
For those of you recently diagnosed, living with or in the final stages of ALS, I want to firstly apologise on behalf of humanity for failing you. When I see disgusting insurance company responses or those given by Medicaid/care that don't allow ALS sufferers to get the vital medical equipment they need in order to breathe, it sickens me. I look at the concentration of wealth with the 1% and I shudder that people are buying a 2nd home in the Hamptons when instead the should be taxed properly so that the government can inject the proper funds required in order to accelerate the rollout of lifesaving treatments of rare diseases and research into their cures.
I am not trying to patronize any ALS victim here when I say, that after reading your stories, you are the true heroes in society. I look at my fingers as I type this, gulp a glass of water down, get up to walk and while I do this, my brain is autonomously able to regulate my breathing so that I can function.
ALS victims are robbed of these very basic processes slowly, painfully and even if only .005% are afflicted with this 'hell on earth' condition, profitable or not, it HAS to be cured. One takes everything for granted until the day its gone.
This community is actually the bravest set of soldiers and probably a bright spot in humanity; how you all take care of each other is commendable. If karma exists (maybe god does, maybe doesn't, I don't know), then maybe death may not have dominion over karma, like it does over our bodies. Good people, great souls are afflicted with ALS that don't "deserve" it (no one does), and perhaps in their next lives (if such a concept even has viability) they will live like kings.
Our society has crumbled, our economic system you would all agree with me is less than optimal where healthcare has become so expensive it has become comical to those observing and dangerous for those suffering. Racism is rife and war and famine increases across the world. Companies like Apple focus on another useless iteration of the Apple I-phone and amass over $200bn in cash reserves and do nothing with it. A $50bn injection into a rare diseases fund by Apple today alone could maybe Cure ALS in 5 years! But no, instead they earn interest on those cash reserves and focus on Apple stock.
This is not the greatest place to be perfectly honest, so for those facing the inevitable, I say, again, I am sorry humanity has failed you and perhaps in the great hereafter, the true living awaits.
I hope I have not offended anyone, I truly care from the bottom of my heart for you all and have great respect for your braveness and courage. I hope Priscilla and Mark (Zucerkberg) with their "Cure all diseases" foundation are able to help rid this disease imminently. I hope my company is able to grow quickly so i can make a meaningful difference in this space.
Big pharma is a disgrace to society. Governments should spend 30% of GDP on healthcare rather than armaments.
Rant over! I am here if any of you ever want to reach out, are feeling down/lonely or just want to talk.
Kay
p.s Carbajal said something in his video that stuck with me; no one wants to talk about ALS, those that dont have it find it to depressing or have never heard of it. Well it shouldn't be this way. We are all human beings and all have a terminal something, but those who have their lives robbed from them when all they want to do and breathe just makes me angry.
My name is Kay and I'm based in London. I am not an ALS sufferer but I found out about this disease by Anthony Carbajal's campaign to raise awareness about it. Most watch and even participate in the ALS ice bucket challenge but didn't take the time to actually understand the gravity of ALS. For some reason, just reading about ALS sufferers, their stories, life changes and the possibly inevitable, I feel compelled to come here and offer whatever moral support I can. I can't move on. I am also speaking to my co founders (we run a small technology company) to start to dedicate a certain % of our profits to sufferers if it means they can prolong their life longer. Every company that is profitable, should contribute a small percentage (discretionary) to the eradication of rare diseases, in my view.
Please if I am in the wrong place, I am so sorry I do not mean to intrude or say anything untoward but I need to get something off my heart.
For those of you recently diagnosed, living with or in the final stages of ALS, I want to firstly apologise on behalf of humanity for failing you. When I see disgusting insurance company responses or those given by Medicaid/care that don't allow ALS sufferers to get the vital medical equipment they need in order to breathe, it sickens me. I look at the concentration of wealth with the 1% and I shudder that people are buying a 2nd home in the Hamptons when instead the should be taxed properly so that the government can inject the proper funds required in order to accelerate the rollout of lifesaving treatments of rare diseases and research into their cures.
I am not trying to patronize any ALS victim here when I say, that after reading your stories, you are the true heroes in society. I look at my fingers as I type this, gulp a glass of water down, get up to walk and while I do this, my brain is autonomously able to regulate my breathing so that I can function.
ALS victims are robbed of these very basic processes slowly, painfully and even if only .005% are afflicted with this 'hell on earth' condition, profitable or not, it HAS to be cured. One takes everything for granted until the day its gone.
This community is actually the bravest set of soldiers and probably a bright spot in humanity; how you all take care of each other is commendable. If karma exists (maybe god does, maybe doesn't, I don't know), then maybe death may not have dominion over karma, like it does over our bodies. Good people, great souls are afflicted with ALS that don't "deserve" it (no one does), and perhaps in their next lives (if such a concept even has viability) they will live like kings.
Our society has crumbled, our economic system you would all agree with me is less than optimal where healthcare has become so expensive it has become comical to those observing and dangerous for those suffering. Racism is rife and war and famine increases across the world. Companies like Apple focus on another useless iteration of the Apple I-phone and amass over $200bn in cash reserves and do nothing with it. A $50bn injection into a rare diseases fund by Apple today alone could maybe Cure ALS in 5 years! But no, instead they earn interest on those cash reserves and focus on Apple stock.
This is not the greatest place to be perfectly honest, so for those facing the inevitable, I say, again, I am sorry humanity has failed you and perhaps in the great hereafter, the true living awaits.
I hope I have not offended anyone, I truly care from the bottom of my heart for you all and have great respect for your braveness and courage. I hope Priscilla and Mark (Zucerkberg) with their "Cure all diseases" foundation are able to help rid this disease imminently. I hope my company is able to grow quickly so i can make a meaningful difference in this space.
Big pharma is a disgrace to society. Governments should spend 30% of GDP on healthcare rather than armaments.
Rant over! I am here if any of you ever want to reach out, are feeling down/lonely or just want to talk.
Kay
p.s Carbajal said something in his video that stuck with me; no one wants to talk about ALS, those that dont have it find it to depressing or have never heard of it. Well it shouldn't be this way. We are all human beings and all have a terminal something, but those who have their lives robbed from them when all they want to do and breathe just makes me angry.
Last edited: