• This topic has 4 replies, 3 voices, and was last updated 1 year ago by Randy.
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    • #16200
      Amanda
      Keymaster

      Has anyone accessed treatments using the Right to Try Act? What steps did you take? Did any organization provide assistance or help you advocate for treatment?

    • #16251

      Nurown now has orphan status ,but will not release the treatment , according to my neurologist . Please let me know when you find success . Thanx

    • #16271
      Randy
      Participant

      Hi Amanda!

      Ronald is right concerning NurOwn (Brainstorm).  My doctor and I applied directly to Brainstorm for “Right to Try” the NurOwn treatment.  In turn, I received a phone call from Brainstorm informing me they were not participating or complying with The Right To Try Act with NurOwn.  She informed me Phase III results would be tabulated by end of year.  In turn, it would take 6-12 months to get NurOwn approved by the FDA.  Please let me know if you have any additional information.

       

    • #16276
      Amanda
      Keymaster

      I know that the Right to Try Act encourages companies to participate but they are not required. I hope that if enough people contact the company and their legislators may help to open more doors, especially to NurOwn.  Please continue to post what you do and what you learn about any treatment! This is great information to share.

    • #16283
      Randy
      Participant

      Hi Jim,

       

      I am in the process of contacting both of my State’s US Senators.

      Randy

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