• Petitioned Corporate Citizens, FDA Executives, Neurologists

This petition was delivered to:

Corporate Citizens, FDA Executives, Neurologists

Authorize and Make Available Compassionate Use Drugs for ALS Patients NOW!

    1. Petition by

      ALS Treat Us Now..non profit

As a community of people with ALS, and their caretakers, we are advocating for the acceleration of ALS treatments that will slow progression.

ALS, sometimes referred to as Lou Gehrig’s Disease, is a progressive, fatal, neurodegenerative disease with most people dying within two to five years of diagnosis.

Terminally ill patients with little to lose want access to what is available that has shown safety and efficacy as soon as possible. We believe that Phase 2 drugs showing safety and efficacy, such as Dexpramipexole, and NP001, as well as off label treatments such as Tamoxifen, should be made available to us through Compassionate Use Now.


If you'd like additional information, or if you'd like to volunteer to help us please email:edjohnson@alumni.duke.edu  We need many more energetic committed folks to join us.

Please email us for more information: treat.us.now@gmail.com or contact@treatalsnow.org

Visit us at:


Thank you,


Barbara, Diane, Ed, Larry, Laura, Sharon, Ted


Recent signatures


    1. Reached 17,500 signatures
    2. ALSTUN update, (ALS Treat Us Now) JULY 30 2012

      ALSTUN update, (ALS Treat Us Now)

      An unofficial and brief update:

      - our petition is now over 16,000 signatures


      - executive level face-to-face meeting set with the FDA in late August.

      - serious discussions with two Pharma CEOs.

      - one-on-one interaction with several key congressional staff members.

      - our letter from neurologist to FDA campaign, please click and act.


      - and much more....

      If you would like to help us, especially if you have some web skills we would love to hear from you, e-mail: treat.us.now@Gmail.com


    3. Reached 15,000 signatures
    4. April 8, 2012 Update

      We have all been very active on many important Treat Us Now To Do's.

      For example:
      - Wanda and Diane are prepping an updated email blast.
      - Tom, Ed and Wanda had a 60 minute 2nd call with exploratory treatment organization
      - We are finishing the White Paper for the NY Times author
      -Diane and we have been working with drug sponsor executives to assure attention is given to Treat Us Now
      - Laura has been posting, as has Joe and we hope many others who I am forgetting to mention.

      The Steering Committee has 2 calls this week to continue our work on these topics and others:
      1- Response to Jonathan../Ed
      2- Response to CEO's..Diane, Ed
      3-Next email blast...Wanda
      4- Next steps with ALSA, MDA and other ALS World groups...Tom, Ed
      5- Next steps with FDA... Ed
      6- How to leverage the Gilenya self trial
      7-Fund Raising..Ted
      8-Website..several have suggestions
      9- End date for the Petition...
      10- Ask all members for a minimum commitment of time.

    5. Kendall's story...how it ends may be a testimonial to "our" commitment

      Kendall's story is one of an ALS family hoping and actively working to gain access to one of the promising new treatments available now to some Trial participants. For most patients there is no hope for access until we can convince the Pharmaceutical companies to ask the FDA for early approval. Most Companies have declined to do so..... That is our mission...Treat Us Now.
      We are not asking for free medicine, patients are prepared to pay market rates, and to actively help the four companies with promising treatment bring them successfully through the FDA reviews. The FDA has said we should have the same early access as the HIV, and Cancer communities have enjoyed.
      So, let us convince the Pharmaceutical companies to Treat Us Now.
      We need your help, our "our" consists of a very small group of volunteers, still well enough to help..
      email: treat.us.now@gmail.com
      Thank you

    6. Reached 10,000 signatures
    7. 2/18/2012 UPDATE

      2/18/2012 Update

      Thank you to all who have signed our petition, thank you for sending it to friends and family. We are now close to 6000 signatures in just 11 weeks.


      We are now a non profit 501(c)(3) organization. As such we ask you to consider contributing to our cause. Our next update will contain more information on the Fund Raising campaign.
      So far our All Volunteer Steering Committee members, and a few dedicated volunteers have been self funding this effort. To really have an impact we need funds to invest in a Public Awareness campaign, and to hire someone who can assist with coordinating our effort, and greatly expanding our outreach.

      Please continue to send us (treat.us.now@gmail.com) your suggestions, comments and most importantly your offers of help....We need many more activist volunteers.

      please continue to send our Petition to everyone you believe may help.

      Thank you from the Steering Committee

    8. Reached 5,000 signatures
    9. 1/16/2012 Update

      Thank you to all who have signed our petition and thank you for sending it to friends and family. We are now close to 2000 signatures in just 6 weeks.
      A correction to our email, it is treat.us.now@gmail.com
      We now have a Facebook page:
      and a draft web site with more information
      Please continue to send us suggestions, comments and most importantly offers of help.
      Thank you from the Steering Committee.

    10. Reached 1,500 signatures
    11. 12/16 update correction

      This is the continuation of the message sent earlier today, apparently it exceeded the character limit.
      "We will read every message sent; we may, or may not be able to answer every message sent. We are discussing building a bare bones website, and/or Facebook, etc. Thank you for your support. The Steering Committee Barbara, Diane, Ed, Laura, Sharon, Ted "

    12. 12/16 update

      Thanks to everyone who has signed and then sent our (your) petition to many family, friends, and strangers for their signature and support....over 1300 have signed in just 3 weeks. It's important to keep this movement building, so please continue to think about who you know who would be interested, and send the petition to them. Our petition steering committee has six active members, all volunteers spending many hours each week supporting the goals of the petition. We are working hard developing detailed plans and beginning to approach the key people and organizations who are qualified to act upon our requests. We have established an email address for you to send us your comments, suggestions;... and to tell us if you would like to take on a bigger role in support of our cause. The email address is: treat.us.now@google.com We will be sending out periodic updates to those who send their email address to this address. .....We will read every message sent; we may, or may not be able to an

    13. Reached 1,000 signatures
    14. 12/4 Update "Our Whisper Campaign"

      The idea is to keep people seeing ALS mentioned everywhere they look. This creates an illusion of ALS being a big deal (we know it is but the general public doesn't see it that way.. yet). The meme is then inserted that this is something needing more attention and the public will be more likely to fund research and demand action.
      Here's how we are doing it:
      We set up a Google alert to send us daily articles on ALS. We then write in the comment section and include our Petition page, as well.
      If you are willing to help us, please follow the link below, or go to http://www.google.com/alerts
      Thank you, Steering Committee

    15. 11/30 Update from the Petition Steering Committee

      Our first priority may be to use both Individual Compassionate Use letters from PALS, and a reasoned /thoughtful direct approach to Drug Companies asking that they petition the FDA for early availability.

      We want to enlist lots of allies so this may take a while. We want to avoid unintended consequences.

      BTW...Has anyone reading this successfully used individual compassionate letters (IND) to the FDA? Requires your Doctor and Drug Company support.

      Petition signers and others are welcome to comment by sending a note to ed@bikes-r-in.com.....And, we are still looking for volunteers to help with our ALS-Treat Us Now! campaign....no funds required just a bit of your time and energy.

    16. Reached 750 signatures
    17. BRAVO! ! Our Petition kicked off the MND Australia Ask The Experts

      MND Association | About Us | MND Connect
      Dear Ed
      I’ve been informed that the petition was raised by an online participant at yesterday’s Ask The Experts session. MND Australia, who orchestrated the session and the video steaming, also gave details of the link of where people can go if they want to sign the petition. I’ve just watched the video session and I can see that this question came from yourself and Diane and kicked off Ask The Experts.

      Looking online your petition has received an extra 200 signatures since the weekend and no doubt your question at MND Australia’s Ask The Experts session and the time dedicated by the panel to discuss the points you raise has played a role in the addition of names.

      Very best wishes

      Louise Coxon

      Communications Manager

      Directorate of External Affairs

      Motor Neurone Disease Association

      Direct line: 01604 611843

      Mobile: 07760 765 142

      Email: louise.coxon@mndassoc

    18. Reached 500 signatures


    Reasons for signing

    • Alyssa Salas CHINO HILLS, CA
      • almost 2 years ago

      One uncle died of ALS, and my other uncle is dying of ALS. A cure needs to be found

    • Laura Boss PHOENIX, AZ
      • almost 2 years ago

      I'm signing because someone I love has ALS. Any drugs that show promise of delaying the progression of ALS should be made available to patients now.

    • Patricia Mino BROOKFIELD, CT
      • almost 2 years ago

      A very good friend has been recently diagnosed with ALS and he may progress quickly and not have the opportunity to use these drugs.

    • Adriana Arruda MANAUS, BRAZIL
      • almost 2 years ago

      Because I love the life

    • dawn sanchezd LANCASTER, CA
      • almost 2 years ago

      family member has als


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