shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
Just wondering if anyone from here was attending the ALS advocacy event in DC next weekend?
Anyone going to Washington DC ?
- Thread starter shelleynshaggy
- Start date
- Status
rknt50a
Distinguished member
- Joined
- Aug 14, 2006
- Messages
- 215
- Reason
- Lost a loved one
- Diagnosis
- 09/1996
- Country
- US
- State
- IN
- City
- IN
I hope those going will take in the Piece by Piece exhibit which will be on display in prominent DC locations for three full days.
ALS Advocacy: Get Ready For ALS Awareness, America!
Please encourage the legislators and staff you call on to visit the display which will be just west of the Capitol Building at the Capitol reflecting pond all day on Tuesday (the day that advocates converge on Capitol Hill). Once people who are not familiar with ALS see the display, they will not forget ALS.
Safe travels, all.
ALS Advocacy: Get Ready For ALS Awareness, America!
Please encourage the legislators and staff you call on to visit the display which will be just west of the Capitol Building at the Capitol reflecting pond all day on Tuesday (the day that advocates converge on Capitol Hill). Once people who are not familiar with ALS see the display, they will not forget ALS.
Safe travels, all.
mare
Senior member
- Joined
- Jun 5, 2008
- Messages
- 771
- Reason
- Lost a loved one
- Country
- US
- State
- PA
- City
- Lafayette Hill
Just got back from an amazing (if not exhausting) 3 days in DC. I am in ALS overload!:lol:
Besides being a beautiful 3 days weather wise, it was a beautiful 3 days "people-wise".
It amazes me the distance some travel, in light of all the hardshps. We met Theresa from Illinois (hope you got your chair fixed!), Tony from New Mexico, and John from Montana, as well as several people from PA.
The candlelight vigil on Sunday night was very moving.
The various sessions on Monday- which covered everything from research updates (stem cells having it's own session), new research & upcoming trials, to federal benefits for Veterans, Social Security & Medicare for PALS, to caring for Caregivers, and advocacy for children & families.
Advocacy Day on Tuesday: there were 3 public policy priorities-
1) request for $10 million for National ALS registry (for fiscal year 2012)
2) request for $15 million to continue ALS Research Program at DOD
3) asking the senator/congressman to become a cosponsor of the MODDERN cures
Solution, a bill that will speed the development of new
treatments & diagnostic tools that can improve & extend the lives of PALS.
The legislation is expected to be introduced in 2011.
To those in the US, I encourage you to become an advocate. It is simple, painless & free!
Sign up on the alsa website; you will receive notices about these policies & "form letters" to send (electronically) to your Senator & Congressmen encouraging them to support the research for ALS (through funds appropriated) & this new bill that will hopefully speed up drug development.
If we don't do it- who will?
Besides being a beautiful 3 days weather wise, it was a beautiful 3 days "people-wise".
It amazes me the distance some travel, in light of all the hardshps. We met Theresa from Illinois (hope you got your chair fixed!), Tony from New Mexico, and John from Montana, as well as several people from PA.
The candlelight vigil on Sunday night was very moving.
The various sessions on Monday- which covered everything from research updates (stem cells having it's own session), new research & upcoming trials, to federal benefits for Veterans, Social Security & Medicare for PALS, to caring for Caregivers, and advocacy for children & families.
Advocacy Day on Tuesday: there were 3 public policy priorities-
1) request for $10 million for National ALS registry (for fiscal year 2012)
2) request for $15 million to continue ALS Research Program at DOD
3) asking the senator/congressman to become a cosponsor of the MODDERN cures
Solution, a bill that will speed the development of new
treatments & diagnostic tools that can improve & extend the lives of PALS.
The legislation is expected to be introduced in 2011.
To those in the US, I encourage you to become an advocate. It is simple, painless & free!
Sign up on the alsa website; you will receive notices about these policies & "form letters" to send (electronically) to your Senator & Congressmen encouraging them to support the research for ALS (through funds appropriated) & this new bill that will hopefully speed up drug development.
If we don't do it- who will?
- Status
