Old 02-15-2017, 11:15 AM #1 (permalink)
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Cool Some thoughts

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.

Last edited by kay2017 : 02-15-2017 at 11:21 AM Reason: spelling
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Old 02-17-2017, 06:23 PM #2 (permalink)
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Default Re: Some thoughts

Hi Kay,
Good Points! I had many questions about research, monies, cures and where are they? I finally had a knee to knee talk with my Dr, the professor. He explained that drug studies usually take years to complete. With ALS patients by the time we are diagnosed most have only a matter of months before we are confined to a wheelchair, drug study stopped. So its important to keep your ear to the ground and do our best to stay on top of them when they become available... I will be going to Colorado to participate in one this spring...I will keep you posted. BTW I usually keep secret information to myself and a select few but God does exist. I suppose the fact could be argued that he has many nicknames and if so, I am sure Karma is one of them.

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Old 02-17-2017, 08:28 PM #3 (permalink)
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Default Re: Some thoughts

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Hi Kay,
Good Points! I had many questions about research, monies, cures and where are they? I finally had a knee to knee talk with my Dr, the professor. He explained that drug studies usually take years to complete. With ALS patients by the time we are diagnosed most have only a matter of months before we are confined to a wheelchair, drug study stopped. So its important to keep your ear to the ground and do our best to stay on top of them when they become available... I will be going to Colorado to participate in one this spring...I will keep you posted. BTW I usually keep secret information to myself and a select few but God does exist. I suppose the fact could be argued that he has many nicknames and if so, I am sure Karma is one of them.

Arlee
Arlee, what are you participating in in Colorado? Also, where in FL do you live? We are returning to Melbourne as soon as the house sells here.

Bruce
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Old 02-18-2017, 12:40 PM #4 (permalink)
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Default Re: Some thoughts

Thanks Kay, for caring.
My brother was diagnosed with this disease last July, he was 39, married, with a toddler. Now they have a new baby, just born. He's a super cool guy, young, funny, kind, a devoted dad and husband, self sacrificing, and politically aware - as in he cares about people and the planet. 6 months after diagnosis he is housebound and looking to move home to accommodate a wheelchair. He is trying to stay upbeat, and continue to be the loving father and husband he has always been, and his wife is fighting to stay on top of it all.
They are suffering so much.
I absolutely agree with what you say - how disgusting that big pharma, indeed big money of any kind, are not donating to find a cure for this disease. And as I understand it, political opposition actually prevents valuable research - eg into cannabis as treatment.
It is an unjust world. And if there is any justice, it's after death, as far as I can see - and I am not religious.
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Old 02-18-2017, 04:32 PM #5 (permalink)
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Default Re: Some thoughts

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Arlee, what are you participating in in Colorado? Also, where in FL do you live? We are returning to Melbourne as soon as the house sells here.

Bruce
Bruce, I live in Daytona Beach Shores, about an hour and a half North of Melbourne. Prayers that your house sells fast. My hope is to get over to the Gulf this Summer. The Gulf waters take all my pain away.
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Old 02-19-2017, 12:16 AM #6 (permalink)
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Default Re: Some thoughts

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Thanks Kay, for caring.
My brother was diagnosed with this disease last July, he was 39, married, with a toddler. Now they have a new baby, just born. He's a super cool guy, young, funny, kind, a devoted dad and husband, self sacrificing, and politically aware - as in he cares about people and the planet. 6 months after diagnosis he is housebound and looking to move home to accommodate a wheelchair. He is trying to stay upbeat, and continue to be the loving father and husband he has always been, and his wife is fighting to stay on top of it all.
They are suffering so much.
I absolutely agree with what you say - how disgusting that big pharma, indeed big money of any kind, are not donating to find a cure for this disease. And as I understand it, political opposition actually prevents valuable research - eg into cannabis as treatment.
It is an unjust world. And if there is any justice, it's after death, as far as I can see - and I am not religious.
Hi SBHarley,

I'm very sorry to hear of of your brother's condition. And from what you say, he is one of those gentle souls who actually would add so much value if were given more time. I will do what I can in my little capacity and begin donating to this website. Will also ask our community to start. Every entrepreneur in my opinion (not necessarily Apple), should start to help to eradicate rare diseases.

May I ask regarding your brother, and sorry for my ignorance, but there was some clinical trial of a drug that Anthony Carbajal was talking about 1-2 years ago and to accelerate its rollout. Is your brother on any of these experimental treatments or are those just not available in the U.S owing to politics?

thanks,
Kay
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Old 02-19-2017, 07:24 AM #7 (permalink)
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Default Re: Some thoughts

Kay, thanks for kind thoughts.
My brother is in the UK. There are virtually no clinical trials there as far as I am aware - at least that is what he has been told.
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Old 02-21-2017, 09:40 AM #8 (permalink)
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Hi SBHarley,

Ok noted. I am sorry to hear that. To be honest I'm not surprised; the NHS is severely underfunded here and even private health insurance in UK sucks.

Kay
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Old 02-23-2017, 12:51 AM #9 (permalink)
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Default Re: Some thoughts

Hi, this is an open message to Atsugi. I received your PM, but in response to your request to reply via a visitor message, stupid me I can't find a place on how to do that .

I wan't to formally apologise for posting in the PALS thread my response, I should have read the conditions before doing so. Rest assured I won't be posting in those threads and will limit my responses to this thread. If you see this Atsugi, thanks for letting me know.

With regards to your question on why I'm here; my interest in ALS is scientific. Being a tech entrepreneur, I wan't to help in any meagre way I can. I will be setting up a small channel for people in my community to donate to ALS via this website, however I am learning more about the disease first (please read my above post in this thread for a detailed background).

Apologies again.

Kay
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