Accelerating access act

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,190
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Being signed at 330 pm EST
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,190
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The President spoke for about 10 minutes. As well a crediting the bipartisan support from Congress he spoke about the advocacy efforts of PALS and CALS especially those from IAMALS.
 

BarrCarr

Member
Joined
Feb 23, 2020
Messages
27
Reason
PALS
Diagnosis
05/2019
Country
US
State
FL
City
Valrico
Here is the legislation and how it works. Text - H.R.3537 - 117th Congress (2021-2022): Accelerating Access to Critical Therapies for ALS Act

5 years of $100 million is allocated. Mark your calendar for December 23, 2025. A report is to presented on who received the money and how much. It will be interesting to see if measurable progress has been made with the money.

ALS Therapy Development Institute's slogan is "ALS is not an incurable disease; It is an Underfunded One." It is not underfunded anymore.

Three years ago Sean Healey gave over $40 million when he was diagnosed with ALS. Mass General named a center after him. He did not enjoy the customary average 5 years of life with the disease. It seems his money did not get him any additional time living.

ALS Association raised $135 million for the Ice Bucket Challenge.

Let us hope allocating a half billion dollars to this disease in the next five years can make a measurable difference and that past performance is no reflection of future performance.


 

Mary2

Distinguished member
Joined
May 1, 2021
Messages
141
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Congratulations to those who worked on the Accelerating Access To Critical Therapies for ALS Act and to those who voted for the Act. This really is an achievement, to have gotten this money allocated for ALS. Thank you!
 
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