mthapa
Member
- Joined
- Aug 16, 2012
- Messages
- 16
- Reason
- PALS
- Diagnosis
- 07/2013
- Country
- IND
- State
- Mid Region
- City
- delhi
hello Wings & scotslassie,
I read your comments but didn't sound so good. your intention may not to hurt me personally but it would be better if you had read the thread carefully before using few words. let me clear one thing Im not begging here money with individuals. my language is not english, so I may have problem expressing my points but i don't think the theme of thread bad enough to be commented like this. at the last sentence of my thread "Organizations working on the field of ALS/MND should consider it seriously & they have to operate programs immediately to provide direct grant or financial support to the affected patients & family" & I said "There are lots of PALS & CALS in the third world & poor community who are facing situation like me or even worse than me who really need direct financial support to ease their life" I have just given my personal feelings & situation as an example. I strongly feel that there must be some mechanism or organizations who can help financially to the ALS sufferers who has problem to fulfill their basic needs.
lots of organizations spending billions of dollars on the name of ALS but they spend most of their fund as unproductive operational expenditure like: seminars, policy making & other administrative aspects. I am not blaming all but most of them have same story. If an INGO gives 1 million dollar as grant, they take back 50 to 70% of money as consultants cost, trainer, seminar, advocacy for policy making. people are dying because of hunger, many women die not having a paracetamol tablet to stop bleeding while giving birth but I don't know what type of policy they make every year spending huge amount of money & what is its purpose ? that's why people often call it white elephant. can you believe hundreds of people dies from diarrhea every year here in nepal. can you imagine what will be the situation of ALS patients in Nepal ?
it is not only about me & my country, situation is even worse in many Afro-Asian countries. ALS suffers who don't have health insurance may also have financial problem. I am just trying to say that there must be some organizations which can help ALS sufferers financially. if there is no such mechanism or organization, we can build such organization under 'sufferer to sufferer' concept which can help needy ALS patients & family globally. we can ask for 10$ or less monthly donation to many people for organization. you can do it in your community, I can do it in my level & many other affected patients & family will be involved because sufferers know the suffering properly.
In my opinion this type of organization is essential, you may think differently.
I read your comments but didn't sound so good. your intention may not to hurt me personally but it would be better if you had read the thread carefully before using few words. let me clear one thing Im not begging here money with individuals. my language is not english, so I may have problem expressing my points but i don't think the theme of thread bad enough to be commented like this. at the last sentence of my thread "Organizations working on the field of ALS/MND should consider it seriously & they have to operate programs immediately to provide direct grant or financial support to the affected patients & family" & I said "There are lots of PALS & CALS in the third world & poor community who are facing situation like me or even worse than me who really need direct financial support to ease their life" I have just given my personal feelings & situation as an example. I strongly feel that there must be some mechanism or organizations who can help financially to the ALS sufferers who has problem to fulfill their basic needs.
lots of organizations spending billions of dollars on the name of ALS but they spend most of their fund as unproductive operational expenditure like: seminars, policy making & other administrative aspects. I am not blaming all but most of them have same story. If an INGO gives 1 million dollar as grant, they take back 50 to 70% of money as consultants cost, trainer, seminar, advocacy for policy making. people are dying because of hunger, many women die not having a paracetamol tablet to stop bleeding while giving birth but I don't know what type of policy they make every year spending huge amount of money & what is its purpose ? that's why people often call it white elephant. can you believe hundreds of people dies from diarrhea every year here in nepal. can you imagine what will be the situation of ALS patients in Nepal ?
it is not only about me & my country, situation is even worse in many Afro-Asian countries. ALS suffers who don't have health insurance may also have financial problem. I am just trying to say that there must be some organizations which can help ALS sufferers financially. if there is no such mechanism or organization, we can build such organization under 'sufferer to sufferer' concept which can help needy ALS patients & family globally. we can ask for 10$ or less monthly donation to many people for organization. you can do it in your community, I can do it in my level & many other affected patients & family will be involved because sufferers know the suffering properly.
In my opinion this type of organization is essential, you may think differently.