ALS (Lou Gehrig's Disease) is a brutal, devastating disease that slowly kills its victims in the worst way- basically, by paralyzing and then suffocating them. ALS IS 100% FATAL. 2014's "Ice Bucket Challenge" has failed to help approve even one new FDA approved ALS drug to slow ALS! Therefore, ALL new drugs in 2021 that can slow and/or even STOP the progression of ALS must be given to ALS victims without delay. Doing anything less is inhumane, unreasonable, and a crime against humanity when money is no object. Now, in 2021 there is such a drug. It's called "TOFERSEN" and is made by the $40B pharma company BIOGEN, INC. "TOFERSEN" is now fully enrolled in a final Phase 3 FDA trial, and appears to be working and slowing ALS in those with "familiar" SOD1 ALS well enough for FDA approval now. 

TRAGEDY ALERT: UNLESS TODAY'S GENERATION OF ELIGIBLE ALS PATIENTS CAN GET THIS DRUG NOW VIA "COMPASSIONATE USE" from the company, THEY WILL DIE. These people are mothers, fathers, children- almost entire generations of a families are currently being wiped out by ALS which is passed down to their children. Would you tell them? When? This is devastating, and it MUST STOP. All these people are waiting on is......NOTHING but a YES.

Yes, it's true. New drugs involve money. Smaller, "boutique" drug companies many times have the best ideas, but can't afford to offer them for free. Under US law, no pharma company is required to give its new drug for free, and thus go broke. This would obviously cause complete loss of the promising drug for all!  So we get it- BUT: when a huge pharma company is worth $40 BILLION DOLLARS, that excuse is void. Especially when the number of doses needed would be relatively small, and the impact so great on suffering. Is there any doubt that these huge pharma companies (which make billions from drugs like "TOFERSEN") SHOULD OFFER these drugs to people with TERMINAL ILLNESSES like ALS- instead of literally making these people DIE WAITING....Over what, MONEY? These are mothers, fathers, children- all whose families have been KILLED by ALS in every generation! Can you imagine having to decide to tell your own child at some point "I'm so sorry, but you will almost surely get ALS", while a drug exists that might even stop the disease if given immediately after diagnosis?  

THIS IS WRONG AND MUST CHANGE! Please help us ASK BIOGEN to give these dying patients its drug, and try to save their lives! There is no doubt this drug will be FDA approved, and will soon generate BILLIONS anyway!