POST #1:
OCTOBER 1ST 2023
#ALSBeforeandAfter
Not everyone understands the devastating reality of ALS.
This week, show the reality of ALS with a before and after photo of yourself, your person with ALS or repost my dad’s post. In your comments, share the things you used to do that are harder or impossible because of ALS.
POST #2:
OCTOBER 8TH, 2023
#changetheALSprognosis
Prognosis means likely course for a disease. And the prognosis for ALS is difficult to hear.
We want to share the ALS experience and we will start by telling how you were diagnosed and what the prognosis was. Did the doctor tell you the average life expectancy? The effectiveness of any medications? What to expect physically? How to manage the emotional impact?
POST #3:
OCTOBER15TH, 2023
#ALSisNOTrare
Why does ALS seem rare? Is it because of how difficult it is for people with ALS to leave their homes? Because the life expectancy is so short?
In 2017, the CDC estimated that over 31,000 people in the United States have ALS. We don’t know an exact number because it is not a reported disease. And if life expectancy was 10 years instead of 2-4 years, there would be 275,000 Americans living with ALS.
This week, share how many people you know who have been impacted by ALS.
https://www.cdc.gov/als/WhatisALS.html
POST #4:
OCTOBER22ND, 2023
#ALSnotincureablejustunderfunded
POST #5:
OCTOBER 29TH, 2023
#Writing4ALS
This week, reach out to your Senators, your Representative or all three. Write them a letter to share your experience with ALS. If you can’t write, email them and let them that you would have written, but ALS has taken that from you.
When we write to our Members of Congress, my kids like to make the envelopes memorable. However you choose to write or type your correspondence, post an image of it on social media to encourage others to reach out.