If Only My Husband Could Try NurOwn
Two years after my husband, Todd, was diagnosed with ALS, I read an article that gave me hope. An Israeli rabbi who had ALS saw improvement with NurOwn, an experimental stem cell treatment by BrainStorm Cell Therapeutics. The man went from being in a wheelchair to walking. I was so excited.
At that time, Todd was still walking. I thought if the disease would stop, we’d be fine. I dared to dream that hope was on the horizon. Maybe our then 6-year-old daughter and almost 3-year-old son wouldn’t lose their dad too early.
I kept my eyes peeled for news of NurOwn. I was again excited when I found out there would be a Phase 2 clinical trial at the Mayo Clinic in Rochester, Minnesota, only a day’s drive away. Perhaps the trajectory of our lives was about to change. I called the clinic, but was disappointed to learn that Todd didn’t qualify for the trial because he had ALS for more than two years. Someone suggested I ask for an exception, so I made another call and pleaded his case to no avail.
I cried.
I signed up for BrainStorm’s newsletter and kept an eye out for results of the trial. Over the next few years, Todd went from walking, to falling, to a wheelchair, to being unable to turn over in bed, and finally to quadriplegia.
NurOwn went on to Phase 3 trials, and I heard stories of participants improving.
One man, Matt Bellina, received treatment under the U.S. Right to Try Act, and he shared his positive results.
I told our 14-year-old daughter it looked like 2021 would be the year there would be a treatment.
I joined others in the ALS community in advocating for NurOwn to be approved immediately based on positive trial data. I wrote letters to lawmakers and the U.S. Food and Drug Administration.
I dared to entertain dreams of a future in which Todd regained some function.
Trial participants and ALS-treatment advocates discussed NurOwn on social media. They speculated that people might need ongoing treatment with it, similar to maintenance chemotherapy for cancer or dialysis for kidney failure.
I thought through the logistics of how we’d make that happen for Todd. Perhaps we’d need to move from our rural area to Minneapolis, near Todd’s family, or Milwaukee, where we used to live and still have friends. After a decade of unrelenting decline, it was encouraging to imagine a brighter future.
Last November, the initial results from the Phase 3 clinical trial were released. I listened to a conference call in which BrainStorm’s CEO Chaim Lebovits shared results. There were some positive findings, but it wasn’t great.
“We didn’t hit the real home run we wanted,” he said.
I cried.
I was not surprised when a few months later, the FDA did not approve NurOwn.
I am left wondering about the positive results some of the trial participants had. Did the people with dramatic results have the placebo or the real treatment? I contacted a couple of them. They told me they won’t know for certain until all the trial data are released, and they don’t know when that will happen.
Mark Bedwell, one of the participants, told me that after his first injection, his muscle cramping was gone, his excess saliva cleared up, he could walk better, and people told him his voice sounded better.
“I think I got the real thing, but if I got the placebo, I want that again,” he quipped. He hasn’t been able to get any more treatments, and he feels his arms weakening.
Todd has tried a lot of supplements since he’s had ALS. I wonder if they’ve been a factor in his slow rate of progression, but the disease has continued to progress nonetheless. Nothing we’ve done has had such observable improvements as some have seen with NurOwn.
The trial did show positive results for those who had a baseline score of 35 out of 40 on the ALS Functional Rating Scale (a higher score indicates more function is retained), and some of those patients are continuing treatment under an expanded access program. I hope the treatment is at least approved for people in that high-functioning category.
No one like Todd, who is paralyzed but still breathing, eating, and talking 11 years after diagnosis, was even allowed into the trial. This disease is so varied in presentation, path, and rate of progression, that it is challenging to determine the effectiveness of a treatment to slow the disease.
But ALS is typically relentlessly progressive, so it would seem that any treatment that results in improvement for some is groundbreaking.
I wish everyone with ALS could try NurOwn so that we could get more data about which subgroups of people with ALS it might help.
***
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.
About the Author
Comments
Chris Roberts
Wow! this is an amazing story. My wife was just diagnosed and every day I feel like she does, and her husband does. Why can't we allow ANY patients with this terrible disease to try what they want and see the results for themselves? What do we have to lose?
Sad. Confused. Hopeful
Alfred Miller,M.D.
I can not claim all ALS is caused by Neuroborreliosis, however, every ALS patient I have encountered (100%) are positive for Borrelia infection when properly tested.
Once the infection is confirmed, appropriate antibiotics will eradicate this infection and halt the progressive deterioration and prevent death.Alfred Miller,M.D.,F.A.C.R.
Retired
Mayo Clinic trained Physician
Private practice Internal Med./Rheumatology for 40 years
Retired Full Professor, Department of Medicine, Clinical Faculty, Univ. Of Texas Medical School
210 Chester St.
San Antonio, Texas, 78209
[email protected]
210 378 3030
Kristin Neva
Yes! Nothing to lose!
Capt T S Asokan
Hi, I am in a similar situation,I am from India. I was recently diagnosed with LMN predominant MND. Doctors feel my condition is a slow progressing MND and put me on Riluzole and Edaravon Combined treatment. Few days back came across a hospital in Mumbai, India-"Neurogen Brain and Spine Institute", who are on to Stem Cell Therapy. My Doctors are not recommending this treatment as it is still in nascent state of development. I am now weighing the pros and cons of this treatment option but finding it very difficult to take a call. It would be good if I could connect to more people who had actually participated in the study. Your post I get more convinced for this treatment as otherwise it would be a slow and definite reversible progression.
Hope I can get more feed back on this treatment in this forum.
Best Regards
Kristin Neva
I know a few people who have traveled outside of the United States for stem cell treatments. It is very costly and I don't know of anyone who has had the same kind of results as from NurOwn. I don't know if India has clinical trials in which you don't need to pay for treatment, but I think that would be preferable.
MikeTiredRdyCure
Thank you Kristin for sharing some of the struggles Todd and yourself have experienced so far.
I had high hopes for NurOwn myself. The most promising drug, I read about those individual cases with very positive results which made me very happy and hopeful as well.
I wish for a better answer myself, better treatments. Long overdue by decades.
Todd strength and yours gives me strength too.
Best regards and wishes!
John Kiehl
Thank you for sharing your story! I lost my Mon to ALS 8 years ago and still read to get updates on this horrible disease...I do not understand why the NurOwn drug that could possibly help some patients is not approved...I know my Mom would of taken a single or a double (baseball lingo) in her fight with ALS...We don't always need to hit a "home-run".
If they can rush through Covid-19 vaccines why not approve NurOwn for ALS patients.
Frustrated!
Kristin Neva
Yes! I like how you continued the baseball analogy. Nurown is at least a single. We'll take it!
John Tallis
Very Very interesting I was formally diagnosed with MND 7yrs ago I cannot walk and talk but still eat mashed up food and one bottle beer a night. I wonder what that drug would do people like me
Kristin Neva
I wish we could find out how it would help those who've had this disease for more than two years!
Renuka Rani
Thank you for sharing your story. My husband was diagnosed in 2016 and since then we have tried several treatments within India and one stem cell in china but i would say it was waste of time and money. Now my husband is on wheelchair. I was following nurown with a lot of hope but at last i was so unhappy. I hope soon some treatment comes with approval. My husband is 36 year old now.
Scott Barnard
Feel free to email me if you have questions [email protected]
So what is Nurown exactly? What they do is they take bone marrow out of you and from the bone marrow they isolate a particular kind of stem cell called "mesenchymal stem cells" (MSCs), they then multiply the mesenchymal stem cells (MSCs) in a bioreactor and then inject them back into the patient's body so that's what Nurown is. So really Nurown is mesenchymal stem cells. So if a person had a response to Nurown then really what that means is they had a response to MSCs.
MSCs were first discovered in the 1980s and as of right now in 2021 there are over 1,000 clinical trials worldwide using MSCs for multitude of diseases, 200 of which are in the USA alone!!! Let me clarify in America there are over 200 clinical trials using MSCs. But mesenchymal stem cells are not yet approved by the FDA. Part of it is money corruption, the pharmaceutical industry will be destroyed by MSCs, because MSCs can literally treat anything from heart disease to spinal cord injury, if the FDA approves MSCs it will destroy the pharmaceutical industry which makes money off of pills. I know this sounds too good to be true but I've been doing my research on MSCs for years now and the stuff is real and the stuff is offering cures to people otherwise had no hope.
You have to travel overseas to get MSCs. There are only three places in the world I would recommend people go to to get MSCs. Stem Cell Institute in Panama is where famous Hollywood celebrities such as Mel Gibson and Ozzy Osbourne go to, Stem Cell Institute will give you world class umbilical cord MSCs (these are mesenchymal stem cells harvested from umbilical cords after a birth) for a starting price of $23,000. The next place I would recommend you go to is called Bioxcellerator in Columbia, this place has a ton of UFC fighters go there regularly, they will also give you umbilical cord MSCs and they're a little bit cheaper than Stem Cell Institute.
This is the third place I recommend people go to for MSCs, it's located in Puerto Vallarta Mexico which is a safe resort town that thousands of American tourists go to, it's called Dream Body Clinic they also will give you umbilical cord MSCs, they're the cheapest place I know of they'll give you 300 million MSCs for $9,000. From all the research I've seen umbilical cord MSCs are the best because they are super young they haven't had a chance to age yet, the younger a stem cell is the better it is so that's why they take MSCs from the umbilical cord.
So to wrap things up, what is Nurown? Well I've already explained to you, so really what you want to get are mesenchymal stem cells because that's exactly what Nurown is.
One final thing, there is one other kind of stem cell that you can only get in Ukraine. There's a clinic called Emcell in the capital of Ukraine and there they are giving people fetal stem cells, which are stem cells taken from aborted fetuses or babies. These fetal stem cells might be even better than umbilical cord MSCs. THEY LITERALLY MIGHT BE EVEN BETTER! But the catch is that they're harvested from aborted babies so the only country in the world that allows their use is Ukraine. There's actually a documentary on Amazon prime called "the God cells: a fetal stem cell Journey" that is all about fetal stem cells, in this documentary they interview people who have gone to Emcell in Ukraine and experienced amazing results!
If this is all new to you I understand your confusion and skepticism that's why I left my email above so you can reach out to me for more questions. I'm not a doctor or scientist I'm just a science enthusiast and I have a particular passion about stem cells. This is what I do in my spare time I read about science & technology.
Ann HawkinsThank you for sh
Thank you for sharing. I used to caregiver, and nothing was more frightening than sitting there with the suction machine in case there was a choking incident. My heart goes out to you, and every ALS patient and family.
I'm wondering about the annoying time restrictions. Must have had ALS for 2 years. Where does that leave patients with bulbar onset? Why are bulbar onset sufferers not included? I am using my imagination and not liking what I'm seeing in there.
My mom was diagnosed in 1979. I'll never be able to say "she passed away in 1981" without feeling like I swallowed a basketball. It was bulbar onset. Nobody, nobody had ever heard of ALS. The doctors had, of course, but in 1979 ALS was still relatively unknown in its rarity. The typical ALS patient was in the 50'ish age group, and of course there was nothing at all available to help the suffering. Now people are getting ALS in their 30's and younger. We need a cure. We need more research, and we need people on the ALS board to do the right thing for patients. We need the meds!!
Margaret
This is fascinating. How is this knowledge so hidden?
Kristin Neva
Wish there was more of a public outcry!
Dawn
My son was in the army for 8 years and when stationed in Hawaii he starting shaking. He went to the doctors and they thought he might have Parkinson’s, but they were wrong he went to another neurologist in Hawaii and did test and was told he had “als”. So he was discharged from the army and moved his family back near family members. It has been four years and my son is going down hill fast he is in a chair, he can’t move his arms, his legs are very wobbly and can’t speak. Last year he had a feeding tube put in and has a lot of mucus that has to been sucked out all the time. He has 3 daughters, and his youngest child is only 3 years old. I feel so bad for my son and there is nothing I can do kept be there for them. It’s so hard for me to see my child go through this, and nobody has any answers. My son was a very vibrant person and know he is shrinking away to nothing. I am lost for words. Thank you for listening.
Kristin Neva
I'm sorry to hear of what your son is going through. So hard to see what this disease does to our loved ones.
jan berkhey
Kan nurown ook ingezet worden tegen segmentale distale SMA??