If Only My Husband Could Try NurOwn

Kristin Neva avatar

by Kristin Neva |

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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.

***

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Comments

Chris Roberts avatar

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

Reply
Kristin Neva avatar

Kristin Neva

Yes! Nothing to lose!

Reply
Capt T S Asokan avatar

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

Reply
Kristin Neva avatar

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.

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MikeTiredRdyCure avatar

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!

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John Kiehl avatar

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!

Reply
Kristin Neva avatar

Kristin Neva

Yes! I like how you continued the baseball analogy. Nurown is at least a single. We'll take it!

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John Tallis avatar

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

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Kristin Neva avatar

Kristin Neva

I wish we could find out how it would help those who've had this disease for more than two years!

Reply
Renuka Rani avatar

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.

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