Tomorrow at 3PM EST, the "research" portion of ALSA's 2020 conference will happen.
IF you can get past the firewalls, IP screener, facial recognition, Photo ID, and retina scan
You must be registered for see images
You must be registered for see images
You must be registered for see images
to get in or register, please ask:
1. WHAT is your very specific PLAN to help pALS gain access to at least 5 new ALS drugs coming soon? What kind of PATHWAY support are you providing to the FDA?
2. WHY did you have Sen. Braun come in yesterday, only to REFUSE to support his Conditional Approval bill? Will you support his NEW bill, due out this week?
3. WHY did you ask pALS to support Mitsubishi's corporate income by asking them to demand that Congress and Senators create a create a bill asking for Medicare to PAY FOR HOME INFUSIONS for a drug that doesn't even work (Radicava)?
4. WHAT exactly, is your plan to support NurOwn once the trial is finished, and once the company asks for approval? Why do you keep telling people "we can't by law support drugs before approval", when in fact it is perfectly legal to do so?
5.
As you may know, a group of well respected ALS patients finally reached the Oval Office after huge effort, and are now very close to getting some kind of Executive action for ALS. WHY has ALSA refused to support them or join this effort to ask the President for help, knowing that executive action has been used by other diseases with success, notably Kidney Care? Does it have anything to do with the almost unanimous one sided political bias at ALSA, above 99%? Do you realize how bad it appears to ALS patients that you appear to be doing nothing to fight for urgent new access to promising new drugs (that exist now), and could save lives immediately?
5a. How do you explain the fact that ALS has now arrived at a point in where proven new drugs exist, but access to them does not? Do you deny that ALSA has never fought for new FDA approval access pathways, and that ALS drug approval is still the same as it was 30 years ago? If you have, what are they specifically?
5b. How do you explain Cystic Fibrosis' incredible success, and ALSA's total failure to create new drugs?
6. Dr. Appel HALTED ALS pogre in 2017, 3 years ago, with "T-REGS". Still, you have refused to fund him adequately (less than $3M) especislly considering the incredible ramifications of his success (HALTED ALS pogre completely!). Do you regret not "superfunding" Dr. Appel while you were flush with IBC cash, ,and will you NOW give him the $1-2M more he needs to complete his groundbreaking ALS T-REG work?
GOOD LUCK!!!!
El punto 5 es un puntazo...
