Updated 6/5/2020, first version published 8/20/2019
I’ve been making “notes to self” every time I come across someone who describes themselves as a responder to NurOwn. By my count there are at least 24, probably 29. It is criminal that this treatment hasn’t been flowing into my husband since last year. Lots of ball dropping got us to this point.
- 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 unchanged.
Here’s Matt with #3 below (Mark) on May 25: https://twitter.com/Markbedwell11/status/1265110664470835200
See later portion of this video: https://youtu.be/uZTA-g33MhE
- 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). 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: PG, our friend—He said his progression slowed during his time in the phase 3 trial. Talked to him personally about it.
- Person 12: Kade Simons—Says NurOwn had a drastic impact on his symptoms (faciculations stopped upon needle being pulled out each dose, speech, tongue control, bladder control (and a whole bunch of other stuff he neames) 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 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 18: Mark Harrison—https://twitter.com/marksberardi/status/991861888597323776?s=20.
- Person 19: 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 20: 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 21: 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 22: Gayle Boone—From Mike Henson’s list. Couldn’t independently confirm (in the 5 minutes I gave it) but I trust Mike so I’m counting this one. Gayle is fighting hard for NurOwn on Twitter.
- Person 23: Elizabeth McCormick (sp?)—Believes it works. Since her first injection the disease stopped progressing: https://cdn.transistor.fm/file/transistor/m/shows/1727/4f3254f9b720862712f0f385d3c449e8.mp3.
- Person 24: Ryoichi Hosoya—Saw improvements in function while on trial. Saw 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.
- Probable 25-29 (5 more responders) from Mike’s list. But he gives only initials to protect privacy: NL, GP, JM, SC, BM. 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 many more. Only about 160 have received the drug over the 10 years it’s been in trial!
Thanks go to Mike Henson for several of these.