Emails to Support Bills & to Get Immediate NurOwn® FDA Approval.

*UPDATED – includes new email address and information about the recently introduced bills.

Good News: We’ve been informed that these emails are reaching the intended recipients. Please don’t hesitate to send to everyone listed below.

  • TIP #1: One way to hide the long list from the people receiving your emails is to put your own email in the To: field and Bcc the long email address list. As this is a long list, you may want to consider sending smaller batches, as many email services limit the number of emails that you can send out at any one time.
  • TIP #2: Here is a video showing how to copy and paste email addresses:
  • TIP #3: Please be bold, but respectful as we are trying to get hearts and minds on our side.
  • TIP #4: Mention ‘Nurown FDA approval’ by name. Don’t tell them what pathway to use (Interim analysis, EO, etc).
  • TIP #5: Write regularly and encourage family/friends to join us. I will send every 2-3 days.
  • TIP #6: Be brief and to the point.
  • TIP #7: Consider attaching a picture of you and/or your family (or your friends on whose behalf you are writing). We want them to see us as people, not just words on a page.
  • TIP #8: Send proudly and without hesitation. We are in this together and we are fighting for our lives.

Thanks to all of our friends on the Facebook group: “No More Excuses! FDA and ALSA Protest” (and also thank you to SM too), who have compiled the lists, verified the names and have confirmed that these are successfully reaching the intended recipients.

Remember, this is a sample letter, we highly encourage you to use elements of this and apply your own experiences, to not only personalize your situation, but to also ensure that the recipient learns about this terrible disease’s impact on real people. ALS does not discriminate, it can burden anyone at anytime – we must make those in power aware that ALS is on the increase.*

*ALS diagnoses are expected to rise by 69% by 2040

———————–Sample letter——————-

Subject: Support Newly Introduced Bills to help ALS sufferers.

Dear Friend,

I am writing to you today on behalf of Dan Shultes {or insert other name here} one of the 30,000 Americans living with ALS.  I am writing because my friend Dan {or insert other name here} is deteriorating quickly, it is heart-breaking to watch and not be able to help him. Therefore, I will continue to email you, until NurOwn® is approved.

I have decided to write to you before it is too late, we need NurOwn® treatment FDA approved. NurOwn® is a treatment showing unprecedented success never seen in the 150 years since ALS was described. The disease has and continues to rob us of so many great people, most famously Stephen Hawking and Lou Gehrig.

The former FDA Commissioner Sharpless, Dr. Marks and Dr. Dunn of the FDA met with ALS patients and advocates at the end of September 2019. Two of those patients have been treated with NurOwn® – their health has improved significantly since receiving this special autologous cellular therapy. One is a Navy pilot, who was diagnosed with ALS over 5 years ago and wheelchair bound for 2 years. He also needed breathing support at night. Soon after receiving NurOwn®, he was able to stand unassisted; his breathing has returned back to normal and he continues to improve. These incredible improvements to his health, have not been seen nor recorded in 150 years. There are many other reputable people who have come forward with amazing testimonies.

Unfortunately meetings will not be enough. Tens of thousands with ALS have died since the FDA gave NurOwn® ‘Fast Track Designation’ in 2014. Many thousands more will die waiting for the completion of an extremely lengthy Phase 3 trial.

I ask you to watch a video of my dear friend Dan {or insert other name here} so you can learn about the ALS patients, people just like you with families, hopes and dreams, from whom you are receiving emails and letters. Dan {or insert other name here} and the other 30,000 sufferers of ALS deserve access to NurOwn®. WE NEED IMMEDIATE FDA APPROVAL OF NUROWN® – THE ONLY VIABLE LAST OPTION BEFORE DEATH.

Several Acts just introduced may help ALS sufferers get the treatments they need now.

Senator Braun just introduced S.3133-Conditional Approval Act.

Congressmen Fortenberry, Westerman, Gallagher, Fitzpatrick and Burchett introduced two bills:

H.R.5480-Placebo No More

H.R.5497- Conditional approval Act

Please support or co-sponsor these bills, as they will benefit all patients with a terminal disease. There is currently no “conditional approval”, or “non-binding” approval option available in the FDA trial system for critical new drugs like NurOwn to be approved immediately; regardless of how much promise they are showing in trial. As you know, ALS is a completely and totally devastating disease that is 100% fatal, and as a society we should be doing everything possible to allow people with ALS to gain ACCESS to these new therapies and to encourage companies to offer them under Right To Try, so that they may have a chance to live again!

Please help grant us  full FDA approval of NurOwn®. You are our only hope.

We are asking you to help. We look forward to hearing back from you and finding ways to change the outcome of ALS.

(enter your name)

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