Top Tweets for #WIWWTP
@sandrawmarlowe Can't "like" this tweet but it's an important story for people to understand. And a 4 month wait to get into a clinic? #WIWWTP
The 90-day extension because of added affirmative data seems like an eternity, esp w the ALS clock running in the background. We wait for the AdCom details and documents. We wait. Then at the very last minute, we get stuff. #WIWWTP https://t.co/HVhcJmsRhQ
“We’ll try harder and won’t set any specific targets and will get back with you in a year.” This is the project management philosophy that has been used on a $124,000,000 ALS registry project. #WIWWTP
@statnews Not a single pure patient advocate. This is a sad summary of all the problems in healthcare. Thank you.
This rept from the CDC Registry folks found
5695 new cases of ALS in 2014,
6045 in 2015,
4861 in 2016.
But the same CDC found G12.2 death certs for
7,271 in 2014
7,403 in 2015
6,702 in 2016
#WIWWTP
Why publish repts that are downright misleading?
Need to get some school math classes to review this… unbelievable. https://t.co/RWwATFVT2D
Things a learned in hs physics class- You don't measure one side of a table w a yardstick & the other w a micrometer to calculate area.
In ALSland we measure progression w a pretty clunky yardstick.
Then we apply a micrometer to the trial data to determine efficacy.
#WIWWTP
Scientific meetings should embrace people with ALS and caregivers who want to attend.
Keep in mind that ALS charity employees who go to these things aren't paying fees personally.
Yet some charities (of all people) expect people with ALS to pay dearly.
#WIWWTP
Individual people w ALS and their caregivers --
Finding help for others in the same boat.
Designing change needed in public policy.
Demanding humane clinical research now.
Not paid a dime to take on work that isn't being done by others.
#WIWWTP
Theory is disconnected from practice! #wiwwtp
Hmmm... We can get weekly data on Covid-19, yet our most recent data from CDC on ALS were published over 2 years ago and reflect data 6 years old. #WIWWTP
Weekly epidemiological update - 23 February 2021 https://t.co/8qaIABf2f2
Raising funds with #WeCantWait urgency, then
treating those funds like an endowment, spending w a very slow drip, drip, drip.
#WIWWTP
We're not fighting for a violinist chair or a literature professorship that needs to last in perpetuity.
We're fighting for dying people.
Now.
So we have three platform trials globally. So we built three soccer stadiums? #WIWWTP
Ok, we're doing a document to distinguish all the registries.
Now we're talking about distinguishing among all the biorepositories.
#WIWWTP
This is not patient centric, folks.
We have orbs of scientists and patients are bouncing among their solar systems.
Let's see... newsletter is spreading the word about the registry to people who are registered for the registry newsletter. #WIWWTP
Then during the clinical trial when people w ALS & caregivers are stuck w inhumane practices (and get nary a lunch coupon for the cafeteria, let alone access to the therapy), the companies that raised the capital say they're small & can't afford a dime more. #WIWWTP 2.
Just saw an exchange in a fb ALS support group re feeding tube.
They are simple. To get one earlier is a lot easier than later (and you don't have to use it).. but... It breaks my heart when people are discussing decision to delay because some trials exclude ppl w tubes. #WIWWTP
Just read the whole @alsassociation report & have lots of Qs, but first, the tidbit below jumped out at me. We have a now $98,000,000 registry that has found at most 16,583 people w ALS in the whole USA. How many more than ALSA's are served by MDA or others or no org? #WIWWTP
Becoming involved in clinical research has been much easier with my seriously ill basset hound than it ever was for my seriously ill Mom. #WIWWTP #talkALStoMe #endALSMND
This is “skilled”? #wiwwtp
Had to get my mom admitted to skilled nursing facility for a few days for a specific treatment. They’re making her watch depressing (probably legal) video: Basically says she may fall, get bed sores, whither away & die slow death- and there’s not much they can do about it.
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