Bobby Forster

Bobby Forster shared his story on his YouTube channel. He was diagnosed with ALS at 25 years old, in September 2014, just four months after symptom onset. Bobby participated in the NurOwn Phase 2 trial, and when the trial was unblinded, he confirmed that he received NurOwn.

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In August 2019 -- trached and living with ALS for five years --Bobby shared how NurOwn had worked:

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“In the fall of 2015, I participated in the phase 2 clinical trial for Brainstorm's NurOwn. After two weeks of treatment, I went from barely able to stand for more than ten seconds, to being able to walk with a walker, to being able to walk unassisted. I also saw significant improvements in my forced vital capacity and speech.... I am so disgusted & ashamed with myself for not being able to get NurOwn approved by the FDA. Please, I am begging you to not make another person suffer unnecessarily anymore.”

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Four years later and understandably frustrated, Bobby had to use a Tobii to speak at an ALS-TDI fundraiser event.

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“I am not going to be a happy go lucky ALS patient as you all know me to be. I am really tired of ALS. I am so f***ng sick and tired of seeing my friends die from this disease, when I know that a treatment exists that can reverse my symptoms. Carol O'Keefe Hamilton, over three and a half years ago, I remember video chatting with you when I was walking after receiving NurOwn. After the treatment wore off, I remember all I could think about was if it worked for anyone else? And what if I continued taking it? I got the first answer when the trial was over and the answer was ‘yes’.”

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Bobby started a change.org petition that asked Brainstorm to pursue Accelerated Approval with the FDA. It collected 169,711 signatures. In his request, he told the world that NurOwn improved his ability to walk and breathe. He said his improvements continued for a month, then he plateaued for a month before he began declining again. That was over two months of “progression-free survival.

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“Unfortunately, the company that makes NurOwn, Brainstorm, is hesitant to pursue accelerated approval of this treatment with the FDA and has opted to conduct a Phase III trial which could delay approval for another 5 years. Without accelerated approval thousands of ALS patients could die over the next several years waiting for the traditional process for approval to be completed.... This treatment has now been in multiple trials both in the US and Israel. It has been shown to be effective and has no significant side effects. It is time for all ALS patients to gain access to this ground- breaking treatment.”

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Tragically Bobby died on June 12, 2023 at just 34 years old. He died waiting for NurOwn. But his caregiver continued his fight to get NurOwn approved for his friends who were still fighting ALS. She filed a Public Comment at the NurOwn AdComm repeating Bobby’s testimony. She closed by saying:

“Bobby never stopped from trying to make a difference. My hope is that even in death we continue to remember his testimony.”

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Her Public Comment described Bobby as a “rapid progressor” but a “super responder.” One decade ago, Bobby was yet another “n of 1” responder who the regulatory community didn’t believe. Bobby died waiting when he could no longer get the cell therapy that was helping him live.