If you have a passion for ALS advocacy & good public policies, pls join us

Status
Not open for further replies.

rknt50a

Distinguished member
Joined
Aug 14, 2006
Messages
214
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.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
980
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
Donald Drumpf is your president. Expect less of everything. Make all the noise you want, he really couldn't care less.
Vincent
 

rknt50a

Distinguished member
Joined
Aug 14, 2006
Messages
214
Reason
Lost a loved one
Diagnosis
09/1996
Country
US
State
IN
City
IN
Fortunately we have a legislative branch that can help on a range of issues.

One purpose of this gathering is to help people with ALS and their caregivers to speak their minds and learn from each other... and then speak their minds to the people on Capitol Hill. Monumental change is truly a long shot, but we'll take incremental change or fixing bureaucratic problems. We're pretty sure that individual advocates showing up in February will get their attention.

That's our idea, and I hope that it will resonate with some folks who can join the conversation.

This is also a way to embrace those who have lost loved ones to ALS back into the conversation. So often the big ALSA conference in May forgets that there are some awesome advocates out there who have ideas and powerful voices.

Some thoughts. Thanks.
 
Status
Not open for further replies.
Top