rknt50a
Distinguished member
- Joined
- Aug 14, 2006
- Messages
- 215
- Reason
- Lost a loved one
- Diagnosis
- 09/1996
- Country
- US
- State
- IN
- City
- IN
Please join us for something new Feb 13-14, 2018!
https://www.morethanourstories.org
Last February three of us did our own mini ALS advocacy day. We had some issues that were very important to us and wanted to get in front of the government appropriations process (which is already iced by the time ALSA has its advocacy day in May). We found it to be an energizing and effective.
So how could we energize some others and provide a format where they could speak their own minds in the future? ALSA advocacy day has become very corporate and scripted, and people don't feel the latitude to stray from the few talking points.
Here's your chance to speak about what is important to YOU next month. It may be a big policy change that needs legislation. It may be FDA regulations. It may be some stupid Medicare rule that is making your life difficult. It may be anything that our government affects. We don't have to agree. We can actually learn from one another and perhaps even come up with some new solutions.
Please take a look at the website and format and join us. It's all about people with ALS and caregivers and those who care about them finding their own voices and expressing themselves. There are some really good people involved so far and our hope is that this will be an energizing complement to other traditional ALS advocacy activities.
Thanks, all.
https://www.morethanourstories.org
Last February three of us did our own mini ALS advocacy day. We had some issues that were very important to us and wanted to get in front of the government appropriations process (which is already iced by the time ALSA has its advocacy day in May). We found it to be an energizing and effective.
So how could we energize some others and provide a format where they could speak their own minds in the future? ALSA advocacy day has become very corporate and scripted, and people don't feel the latitude to stray from the few talking points.
Here's your chance to speak about what is important to YOU next month. It may be a big policy change that needs legislation. It may be FDA regulations. It may be some stupid Medicare rule that is making your life difficult. It may be anything that our government affects. We don't have to agree. We can actually learn from one another and perhaps even come up with some new solutions.
Please take a look at the website and format and join us. It's all about people with ALS and caregivers and those who care about them finding their own voices and expressing themselves. There are some really good people involved so far and our hope is that this will be an energizing complement to other traditional ALS advocacy activities.
Thanks, all.