AGENDA

 
Tuesday
February 12

​10 am - Introductions

Morning - Every participant will share briefly whatever public policy issues are important to him or her.  We will divide up the available time equally.  No Powerpoint.  No fancy presentations or long speeches.  It's a chance for YOU to tell others what YOU think is important.  No interruptions.  No discussion.  We'll save questions and discussion for the afternoon.

Lunch Break - We'll take a short lunch break in our meeting room (think sandwiches and chips).  This isn't going to be a fancy conference, but we can guarantee that the idea-sharing will be four-star.

Afternoon - We'll have discussion on what we heard from everyone in the morning.  An experienced facilitator has volunteered her time to help us learn from each other.  We don't have to all agree.  This day is about sharing and refining YOUR calls to action.

Before we adjourn for the day, each of us will have a chance to summarize what we will be sharing with our legislators on Wednesday.

Wednesday
February 13
This is YOUR day to speak from YOUR heart on Capitol Hill

 

​You'll need appointments with your two Senators and your Member of Congress.  We'll help you with that if you like.

Then you'll call on them and talk about the action items related to ALS that YOU think are important.

Personal conversations with legislators and their staffs are important, and this is your chance to be center stage and speak to your issues.

The talking points are all yours!

What might we talk about?  It's completely up to you.

SSDICDCRegistryHomeCareResearchFundsCDMRPNINDSNIHDrugApprovalsFDARightToTryAcceleratedApprovalSteveGleasonActCMSMedicareMedicaidAcceleratedApprovalConditionalApprovalInsuranceSafetyEfficacyDrugCostsReciprocityDisabilityVeteransCareVeteransBenefitsBureaucracyTechnologyPWCsFamilyCaregiversETCetc

Can't Travel?
Remote Access on February 12

 

For those who can't travel, we'll offer remote access.  It won't be as good as being there in person, but we'll do our best to include you in the idea-sharing and discussions.  You'll need to register.  Just note that you'll need remote access on the Registration form.

 

 

We'll Deliver For You on February 13
 

Everyone who can't travel is encouraged to take part in our day on the Hill remotely, either by contacting your legislators directly via email or by sending us your messages.  We'll print them and hand-deliver them to their offices on February 13.

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