ALSTUN Update from the nonprofit that actively seeks treatment now!

[edjohnson]

ALS treat us now has kept its focus on near term treatment access through regulatory negotiation and through partnering with dug companies. We feel we have made great progress in the last three months.

From the outside it can be hard to see everything that we're doing. These are delicate conversations we're having with several high ranking officials, and unfortunately they can take longer than we would like. Every member of our steering committee either is an ALS patient or has a loved one suffering from this emergency condition. We work with urgency and passion.

And we would like to bring more of you into direct operational roles, if you are willing.

Our petition now has over 17,000 signatures, it has been used with key executives in the FDA and pharmaceutical companies.

 

[rknt50a]

edjohnson,

Is there any chance that your steering group would consider sharing more information about the timing and stakeholders in your delicate discussions? I understand the need for discretion.

In the past, ALS advocacy has suffered from much organizational "don't worry, we have you covered," attitude. The lack of transparency has really had a dampening effect on energy and ideas. In this day and age, there is needs to be continuum between being a pilot steering a vehicle and being a passenger riding along strapped in a seat.

I hope that some insights into the players and the nature of the conversations might be shared. There are thousands of us who are very interested and committed to the progress in the fight.

Thank you very much for your work and consideration.

 

[edjohnson]

We have regular communication with our active supporters. We connect on a daily basis through our Google group, and more formally by frequent updates especially after our weekly teleconferences.

 

[brooksea]

Can you give a link to the petition?

 

[tmurphy58]

ALS treat us now has kept its focus on near term treatment access through regulatory negotiation and through partnering with dug companies. We feel we have made great progress in the last three months.

From the outside it can be hard to see everything that we're doing. These are delicate conversations we're having with several high ranking officials, and unfortunately they can take longer than we would like. Every member of our steering committee either is an ALS patient or has a loved one suffering from this emergency condition. We work with urgency and passion.

And we would like to bring more of you into direct operational roles, if you are willing.

Our petition now has over 17,000 signatures, it has been used with key executives in the FDA and pharmaceutical companies.

As a former member of the ALSTUN Steering Committee -- can you please explain at a summary level the "delicate conversations" you are having with these "high ranking" officials that can't be shared with anyone?

From the outside it can be hard to see everything that we're doing. These are delicate conversations we're having with several high ranking officials, and unfortunately they can take longer than we would like.