I’ve been making little “notes to self” every time I come across someone who describes themselves as a responder to NurOwn. By my count there are at least 17, but probably many more as these are just ones I stumbled across (and only 150 have participated in trials I believe, with a 50% placebo rate).
- Person 1: Matt Bellina—First and only person to get it in US outside of the trial. Progression seems to have slowed.
- Person 2: Mike Cimbura—Was in Phase 2 trial. Went from not being able to use his hands to being able to lift them above head, comb his hair. He was unable to access the treatment after the trial and passed away in March. https://www.denverpost.com/2016/12/05/our-dad-has-als-the-senate-could-help-by-reforming-fda-drug-approval/
- Person 3: Mark Bedwell—Could barely walk, had difficulty speaking and now runs around a conference table, speech markedly improved: https://philadelphia.cbslocal.com/2019/03/11/als-patients-fighting-fda-for-experimental-drug-nurown/
- Person 4: Bobby Forster—Was in phase 2. Probably the most famous responder. Couldn’t walk pre-trial; could walk after trial. https://whatsupnewp.com/2016/10/bobby-im-dying-deserve-right-try/
- Person 5: Dawn Boushelle—Phase 3 trial participant and scientist. She gives a long interview at https://youtu.be/05Nx3Xpzjy4 where she says that she is positive NurOwn gave her 6-8 months more living. The 6 months she was in the trial, her progression halted. It resumed immediately after the trial ended. They haven’t told her whether or not she got the placebo, but they (Brainstorm) told her that after week 14 the placebo effect ceases. Two months after her last treatment, Dawn could no longer open water bottles, problems in her leg began, etc.
- Person 6: Thurman Maynard—In Phase 3. Couldn’t ride motor cycle for 2 years but now can (couldn’t work clutch but now can, couldn’t stand on toes but now can). Interviewed on Nightline in Aug. 2019. https://abcnews.go.com/Nightline/video/als-patient-rides-motorcycle-unable-years-part-64874209
- Person 7: Terri P—Says NurOwn stopped her progression. (Hiding her last name ’cause don’t know whether she went public.)
- Person 8—A pALS I met through my activist channels believes NurOwn (phase 3) may have slowed her progression (either that or that she happened to plateau at the same time). She went to Korea to get Corestem believing that Corestem is similar to NurOwn.
- Person 9—Roberto Muggli—Three weeks after 1st injection could move affected arm (right arm) more easily. Six to seven months after the trial, zero progression in his right arm, which was the only body part that’s been affected. Also went from having to elevate upper body at night (pre-trial) to normal sleep position (post trial). Estimates his fasciculations decreased by 60-70%. https://twitter.com/silverberg_matt/status/1186116254349836288
- Person 10—Rabbi Refael Shmulevitz https://twitter.com/silverberg_matt/status/1186120947050438657?s=20
- Person 11—PG, our friend. He said his progression slowed during his time in the phase 3 trial.
- Persons 12-14—The three advanced-stage Israelis whose conditions markedly improved (which includes Omri Chotam) as reported in ‘The soldier and the rabbi’ section of this article: https://www.israel21c.org/revolutionary-stem-cell-als-treatment-begins-advanced-trials/ (thank you for this info, Shah). The fourth person the article mentions is already mentioned as my #14.
- Person 15—Cathy Martin https://youtu.be/0Cl3gqKZ-wo.
- Person 16: Eric Swarz—Started noticing improvement in hand function a month after first treatment (could be placebo effect but then it’s a strong one in this case). https://abc7.com/health/uci-researchers-studying-ways-to-slow-the-progression-of-als-/3302128/
- Person 17: Mark Harrison—https://twitter.com/marksberardi/status/991861888597323776?s=20.
- Possible persons 18 and 19—Two ladies who do not wish to go public, cited in a meeting of an organization I belong to. Might be separate but I suspect this is referring to Cathy Martin.
- Possible person 20—I saw another person NurOwn has worked on who attended the No More Excuses protest June 12. I’ll try to track down their name. Might be a duplicate of one of the above.
- Possible person 22—Dawn mentions another Phase 3 participant she talked with during the trial who went from not being able to walk at for 15 months to walking again. Might be a duplicate.