Updated 2/14/2021, first version published 8/20/2019
I’ve found 29 clear responders to NurOwn. According to Mike Henson who tracks cases more closely, there are about 40 clear responders based on the totality of evidence. Upon release of the Phase 2 results in Jan. 2016, when my beloved was still early stage, ALS orgs should’ve been doing everything possible to get NurOwn to patients immediately, as so many requested of them in 2016.
- Person 1: Matt Bellina—First and only person to get it in US outside of the trial. Increased slowing of progression after 4th and 5th injections. Lung function improved by 10 percent. ALSFRS-R score did not go down while on treatment.
Here’s Matt with #3 below (Mark) on May 25, 2020: https://twitter.com/Markbedwell11/status/1265110664470835200
See later portion of this video: https://youtu.be/uZTA-g33MhE
A late 2020 statement from Matt: I have not had a (NurOwn) treatment in about six months. In February I got pneumonia and spent eight days in ICU. We thought I lost all my gains but I actually recovered thank God. Can still stand and today I did 9 miles on a recombent elliptical. Both things I couldn’t do 18 months ago.
- 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 2019. 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). Says he knows what he lost, knows what he gained, knows NurOwn worked.
Interviewed Aug 10, 2020: https://www.wowktv.com/news/local/father-and-husband-in-the-fight-of-his-life/
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—Quite famously helped him https://twitter.com/silverberg_matt/status/1186120947050438657?s=20
- Person 11: Phil Green—He said his progression slowed during his time in the phase 3 trial. Talked to him personally about it and he also posted in social media: Imagine being in a clinical trial that stopped the progression of your ALS (3rd party data supported) & now have to wait a year+ before it may get FDA approval. While I wait, I am losing my ability to walk, speak, & breathe. @HollyLynchez your “FDA Gatekeeping” is killing me.
- Person 12: Kade Simons—Says NurOwn had a drastic impact on his symptoms (fasciculations stopped upon needle being pulled out each dose, speech, tongue control, bladder control (and a whole bunch of other stuff he names) were improved. Effects lasted about 6 weeks. He has a fast progression. The video is interesting and he and his mom are such sweeties: https://www.youtube.com/watch?v=WOWsU1VW8bc
- Persons 13-15—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 16: Cathy Martin—Says her progression stopped during the injections and continued on again when she stopped the injections. https://youtu.be/0Cl3gqKZ-wo.
- Person 17: Eric Stevens—Participated in Phase 3, a firefighter who formerly played in the NFL for the St. Louis Rams. Leading up to the trial, Eric was progressing rapidly. His left hand was getting weaker, speech was slurring, fasciculations were spreading, and his legs were giving out. While on NurOwn Feb – Sept 2020, these things (left hand, speech, fasciculations, and legs) did not get any worse. When off the treatment Dec 2020 – today (Feb 2021) timeframe, the progression picked up speed again. See minute 17 of https://youtu.be/1TDWRx14_rk (this is Amanda, Eric’s wife).
- Person 18 – Betsy McCormick—During her time in the trial her progression stopped. See minute 22 of https://youtu.be/1TDWRx14_rk (this is Betsy herself describing the positive results). Betsy’s a professor at the University of Tulsa.
Additional info about Betsy: https://youtu.be/GBaiKqfP1DUhttps://cdn.transistor.fm/file/transistor/m/shows/1727/4f3254f9b720862712f0f385d3c449e8.mp3.
- Person 19: 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 20: Mark Harrison—https://twitter.com/marksberardi/status/991861888597323776?s=20.
- Person 21: Josh Smith—Similar to person 8 in this list. Had a fast progression prior to the first injections. During the injection months, the progression stopped. https://youtu.be/uZTA-g33MhE
- Person 22: Trevor Stoffer—Saw dramatic improvements for a month after the first injection. Could move much better and his muscle spasms (which were intense leading up to the injection) stopped for a month: https://youtu.be/_HgkEPu1BlE
- Person 23: Noel Mermer—In his own words at https://www.charlestoncitypaper.com/charleston/a-note-from-city-paper-publisher-noel-mermer/Content?oid=25553823, it slowed his progression:
A close friend helped me gain access to the trial [at Mass Gen], which was a first of its kind. My stem cells were harvested and sent to the City of Hope, Calif., where they were grown and then injected back into my spinal cord. This trial involved 14 trips to Boston over a 12-month period — I was the first person in the U.S. to complete the trial. Throughout, we felt that the stem cells were slowing the progression of the disease, and that I was one of the lucky ones receiving my own stem cells as opposed to the placebo. Unfortunately, after the completion of the year-long study, my stem cells were no longer available to me.
- Person 24: Gayle Boone—Galye was in Phase 3 and says it works, says, “My decline stopped while receiving treatments.” She says it should be rolled out now. https://twitter.com/GayleBoone12/status/1265091114589212675
- Person 25: Ryoichi Hosoya—Saw improvements in function while on trial. Saw reversal and slowing of progression while in trial. https://www.squamishchief.com/community/hope-for-an-als-cure-for-squamish-ski-instructor-and-others-like-him-1.24146741. https://twitter.com/hosoyawinnie?lang=en
- Probable 26-29 (5 more responders) from Mike’s list. But he gives only initials to protect privacy: NL, GP, JM, SC. I can’t independently confirm but I trust Mike.
- Possible persons 30 and 31—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 32—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 33—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.
The above are just those I stumbled upon. There are probably several more. Only about 160 have received the treatment over the 10 years it’s been in trial!
Thanks go to Mike Henson of No More Excuses for most of these.