jamorel
Distinguished member
- Joined
- Jan 9, 2010
- Messages
- 193
- Country
- CA
- State
- Alberta
- City
- Calgary
I created this wish list in response to a thread about ALS TDI but I decided I wanted to post it to the general forum and see if there was anything we needed to add. You see, after writing it, I read another thread that talked about the ALSA not wanting to support ALSGA and about the Canadian ALS Society having to change an event logo or pay a "fee" to the ALSA for its use. It seems like this is even more of an issue than I imagined, and I imagined it to be a big issue. So here, I will post it on the general forum: My wish list.
1) I want a database and I think that this should be a jointly funded, concerted effort that crosses borders. How can we hope to find a cure when we don't know who has it, when they got it, what they were exposed to or what sort of family history they might have with neuro diseases.
2) I want access to care. People are hit hard and fast with this disease, and because of the physical toll, most are forced to shell out their entire life savings for equipment they may use for a few months or a few years. I have heard from people on this forum and elsewhere who have lost their significant others or who do not have a family to support them and are alone. I have read about long and ridiculous trips to doctors only to be met by stairs and misunderstanding and the whole thing is wrong.
3) I want to see associations and orgs. work together, at least in these two areas, and dedicate some portion of their efforts and funds toward it because if we do not put some effort into what is happening today, how can we guarantee that anything will come of it for tomorrow?
I don't think we can afford to support a single hero as this is a team effort... and I also don't think we can put all of our efforts in one basket, be that research or personal care. There are many baskets and we are suppose to be working together on this.
1) I want a database and I think that this should be a jointly funded, concerted effort that crosses borders. How can we hope to find a cure when we don't know who has it, when they got it, what they were exposed to or what sort of family history they might have with neuro diseases.
2) I want access to care. People are hit hard and fast with this disease, and because of the physical toll, most are forced to shell out their entire life savings for equipment they may use for a few months or a few years. I have heard from people on this forum and elsewhere who have lost their significant others or who do not have a family to support them and are alone. I have read about long and ridiculous trips to doctors only to be met by stairs and misunderstanding and the whole thing is wrong.
3) I want to see associations and orgs. work together, at least in these two areas, and dedicate some portion of their efforts and funds toward it because if we do not put some effort into what is happening today, how can we guarantee that anything will come of it for tomorrow?
I don't think we can afford to support a single hero as this is a team effort... and I also don't think we can put all of our efforts in one basket, be that research or personal care. There are many baskets and we are suppose to be working together on this.