05
May 2015
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Dr. Mark Freedman

Beyond damage control: can MS be fixed?

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When it comes to treating multiple sclerosis (MS), Dr. Mark Freedman would like to move beyond damage control.

“We can limit, to some extent and in some cases completely, the damage,” says Dr.…

When it comes to treating multiple sclerosis (MS), Dr. Mark Freedman would like to move beyond damage control.

“We can limit, to some extent and in some cases completely, the damage,” says Dr. Freedman, a clinician/researcher at the Ottawa Hospital Research Institute. “But fixing the damage that’s been done? Not yet. “

Fixing the damage done by MS is the ultimate goal of a new $4.2-million clinical trial that Dr. Freedman is co-leading with Dr. James J. Marriott of the University of Manitoba in Winnipeg.  It’s called MESCAMS (for MEsenchymal Stem cell therapy for CAnadian MS patients).

“The excitement surrounding the MESCAMS has been tremendous,” says Yves Savoie, President and CEO, MS Society of Canada, a major supporter of the clinical trial.  “Not only is Canada fortunate to have two  trial sites in both Ottawa and Winnipeg – accepting a total of 40 Canadian participants – but MESCAMS is also part of a larger international research effort studying mesenchymal stem cells that pools scientific resources and expertise from nine countries. This level of collaboration will yield important answers about the efficacy of cell-based treatments.”

Found mostly in the bone marrow, fatty tissue and cartilage, mesenchymal stem cells have a natural anti-inflammatory effect that makes them an intriguing possibility for treating MS, which occurs when a person’s immune system attacks and inflames the protective sheath (myelin) covering nerves. Myelin damage snags the signals that flow from the brain through the nervous system to the rest of the body.

“These cells possibly will act like anti-inflammatory drugs to control the disease,” says Dr. Freedman. ”But what we’re really looking for is the potential for something to heal up, for a sign that these cells are doing something.  Other people have noted it in the optic nerve system, which is actually an extension of the brain and is affected by MS.”

Readers may be familiar with the story of Jennifer Molson, the Ottawa woman whose MS symptoms were eradicated by a stem cell bone marrow transplant conducted by Dr. Freedman and Dr. Harry Atkins as part of an earlier clinical trial. Each trial participant underwent a harrowing course of chemotherapy that virtually destroyed their immune system before being given a fortified version of their own bone marrow stem cells to rebuild it. With MESCAMS no such chemo bombardment is necessary.

“We don’t exactly know why Jennifer, and others in the trial, recovered. We think the reason is we were able to curb the inflammatory response to the point where the body could heal.  These cells that we’re using (mesenchymal stem cells) have been shown, at least in early studies in humans, to repair — period. But they happen, at the same time, to have an anti-inflammatory effect. So they may be able to accomplish both things together. And without the need of any chemo, there is very little risk to the people taking it.”

The real challenge, says Dr. Freedman, will be measuring — and scientifically documenting — repair, if it happens. “When was the last time you heard something that could repair things in MS? Nobody’s been able to show it.  So we’re hoping we will be able to see it and measure it. That’s the real goal of this study.  If we can all show the same signal through nine or 10 sites around the world doing this, then we’re going to have the evidence we need to move to the next stage, which is doing this en masse with people who have already acquired damage . That’s what our MS patients are all hoping for.“

However, Dr. Freedman urges caution.  This is an early stage clinical trial. If the mesenchymal stem cells do affect repair, it may be minimal. “The primary outcome is going to be the effect on gadolinium-enhanced lesions in MS as shown by MRI. It will prove whether we have biologically viable cells capable of creating an effect that can be measured in humans.  It may sound trivial, but it’s never been done.”

Editor’s Note: MESCAMS organizers have published a Frequently Asked Questions page about the trial here (http://bit.ly/1ES3jN1).  Full eligibility criteria are available here(https://clinicaltrials.gov/show/NCT02239393).

 

 

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13
May 2010
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MS and Stem Cells: A behind the scenes look

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The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells.

The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long salute to MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, an interview with Marjorie Bowman, RN, the Research Coordinator for the study.

Q: What’s your role in this study?

A: The study is headed by Dr. Harry Atkins and Dr. Mark Freedman, though there are many people involved. Dr. Atkins is the bone marrow transplant physician, he oversees the stem cell transplants; Dr. Freedman is a neurologist who specializes in MS; and I’m the Research Coordinator. We’ve all been involved in the study from the very beginning, and my role has evolved quite a bit over the past 10 years.

At the very beginning, my job was to get the study up and running — submitting and getting approval from the ethics board — which is a huge process; developing all the data collection tools and forms, and getting everything set up within the hospital. It was big learning experience for everyone involved because the clinics at the hospital hadn’t done a lot of research transplants, so it was very different.

Another big part of my job early in the study was screening and speaking to potential patients. When we received the grant from the MS Society of Canada, there was a big announcement on their website and word spread quickly among the MS community. When I started my position, the MS Clinic had been keeping a list of all the people who had called to inquire about the study. So I had this list of patients that I had to contact and screen. There were 20 patients on this list. With a lot of the inquiries, you know right away that they’re not going to meet the criteria, but you still have to speak with them and explain the trial.

And that was the first year. We developed the protocol, and got everything in place. The first patient received a transplant in October of 2001.

Q: What was it like once you started seeing patients?

A: With the first patient, it was a matter of working through the protocol we had developed step by step, and it was a big learning experience. The protocol has evolved with the study, and we’ve kept up with changes in treatment and technology.

Pre-transplant, we did all the screening. We had to make sure the patient met all the inclusion criteria, and then go through the consent form with them and have them sign it, which is a process. The patients had two counseling sessions prior to signing the consent form, one with Dr. Atkins and one with Dr. Freedman.

Then, the patient goes for a first baseline visit, where they have all the neurological testing and blood work done, and then safety testing to see if they are a good candidate for the study. If they had any illnesses besides MS, they were excluded from the study. So we were testing the heart, lungs, things like that. I coordinated all that, all the testing and visits. I worked very closely with the patients during this process and got to know them very well.

Once they got to the transplant phase of the study, they were turned over to the bone marrow transplant team at The Ottawa Hospital. During that time, I was the first point of contact if they had any problems.

Once they had been through the transplant, I coordinated post-transplant testing. All the patients have to have lumbar punctures and MRI and MRS scans once a year, plus lots of neurological testing. I was kind of overseeing all that testing.

In the meantime, I was still screening patients and talking to potential patients from all over Canada. And that’s something we didn’t expect. The people from out of town need a little extra support to get here and go through the trial. And there were some very brave, dedicated patients for sure.

Q: How many patients have gone through the trial and how much information are you collecting?

A: Of the 26 patients that have gone through the trial, 24 have actually received stem cell transplants. We have 2 control patients — they had the same inclusion criteria but refused the transplant, and we’ve been following them closely to see how their symptoms compare with those who have received a transplant.

In 2008, we received another grant from the MS Society to follow these patients even further. Originally we followed patients for three years after their transplants. But the investigators weren’t satisfied with only three years. They wanted to follow them longer because we need to see that their MS is stable for a sustained period of time. So, we’re now going to be following the patients until 2012. It’s been such a range of time, because the first patient received a transplant in 2001 and the most recent patient received one in December of 2009. So the last patient will have a three year follow up, but the first will have 11 years. It’s great to be able to follow them for so long and to see the changes.

It’s interesting, my role has evolved with the study, now that the transplants are done, compiling and analyzing the data is a bigger part of my job. We’ve collected literally rooms worth of data on the patients. I have four two-inch binders on each patient, so it’s a lot.

We’re working on compiling all of it right now and preparing to present our findings. We’re going to be publishing for the next 10 years by the looks of it, and we’re hoping to publish our first paper in the fall.

Q: What kind of results have you seen?

A: So, this is kind of a summary: we’ve seen stabilization in many of the patients, which was our goal. It has been exiciting to see improvments in some patients. Some have been able to walk without mobility aids, many have experienced decreased fatigue. Some have returned to work and are now focusing on new goals. After getting to know these patients so well, seeing the improvement in their quality of life has been surprising and rewarding for me.

Q: What has been the most rewarding aspect of working on this study?

A: The most rewarding part of the study has been the patients. Just getting to know them and helping them through this trial has been fantastic. Whenever I was having a bad day, I would think about what these patients were doing and what they were going through.

Q: What are your hopes for the future of the study?

A: I hope that this will become standard care for MS, though of course it’s not for everyone. Dr. Atkins has said that only 5-10 % of MS patients would benefit from this kind of treatment.

But there have been a number of interesting findings, not all strictly related to the transplant. One thing I’m hoping the data from the study will show is that we don’t need to give MS patients so many immunosuppressants, so maybe it’ll lead to less toxic therapies for   all MS patients.

Marjorie Bowman is the mother of two young children. She enjoys reading and playing shinny.

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06
May 2010
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MS and Stem Cells: I still have MS, but I don’t

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The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells.

The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long salute to MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, an article by Jennifer Molson, a patient in the study.

Image courtesy of The Ottawa Hospital

I was 21 when I was diagnosed with MS. It was 1996, and I was healthy – running two km everyday, working full time, taking college courses and volunteering two days a week with the Ottawa Police Youth Program. I wanted to become a police officer. And, like any girl, I dreamed of walking down the aisle on my wedding day and dancing with my dad and husband.

Then I started to notice tingling and numbness in my arms and hands. I started to feel tired, too tired to run most days, and, when I worked out at the gym, I found the heat exhausting.

My family doctor thought the numbness was due to carpal tunnel syndrome in my wrist and the tiredness a result of working too much and staying out too late. I slowed down a bit, but the symptoms remained. Soon after, I had a lumbar puncture and a MRI scan. The diagnosis: Relapsing/Remitting MS.

Pretty quickly, I was transferred to the MS Clinic at the Ottawa General Hospital run by Dr. Mark Freedman. Over the next six years, I had multiple relapses: I lost function in my arm, experienced numbness in my legs and went through periods of extreme dizziness and nausea. I never knew how or when my MS would strike, and after each relapse I was left with more disability. I realised that becoming a police officer was not in my future.

The summer of 2000 was great, but by September I began to notice a lot of new symptoms and, by the beginning of 2001, I could no longer work. I was barely able to stand, had no sensation from mid-chest to my toes and was constantly nauseous. An MRI scan showed lesions on my brain stem. My diagnosis was changed to Secondary Progressive MS.

That year, Dr. Freedman told me about a new stem cell transplant study for patients with MS. They would destroy my immune system using chemotherapy and then use stem cells from my own bone marrow to essentially grow a new immune system. Their goal was to stop the progression of the disease, not to fix damage that had already been done. The best I was hoping for at that point was to not get any worse.

So, even though the procedure was experimental and involved risks, including seizures, sterility, and even death, my decision was easy. I had tried everything else, so I had no fear. My boyfriend (now husband), however, was terrified, but supported my decision. You know it’s pretty bad when death is a viable option and what you’re doing to help could actually kill you in the process.

After months of tests, surgery, stem cell recovery, chemo treatments and injections I was ready to begin the transplant stage on July 4th, 2002. I had my stem cells harvested, and over the next three weeks they were transplanted into me.

The first six to eight months after the transplant are a blur and involved overwhelming tiredness and lots of medical appointments. My life was scheduled day by day from February of 2002 until the time I was done. Even now, I still have to go for tests and follow-ups, but it’s a longer leash.

When I look back it was probably about two years before I really started to feel better. And it was sometimes so gradual that I didn’t realize I was getting better. One day I realised I had walked to my mailbox and back without a cane. Soon after, I walked into Dr. Freedman’s office and he looked down and said, “Jen, you’re wearing high heels!” For someone who had been wheelchair-bound a couple of years earlier, this was a remarkable thing.

I approach my eighth year post-transplant mark this July. I’m no longer taking any medication. I returned to work full-time, passed my driving test, am completely independent, inside my home and out. I’ve even gone downhill skiing. I was married seven years ago and, yes, I did dance at my wedding.

I still have MS, but I don’t. For many people with this disease, your whole life is spent coping with getting worse. For me, I’m fortunate to be coping with getting better.

Jennifer Molson was patient number six in the Canadian MS Bone Marrow Transplant Research Study. She is also a True Blood expert.

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29
Jan 2015
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Canadian researchers unveil stem cell trial for MS

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A new clinical trial in Ottawa and Winnipeg will investigate the ability of stem cells to suppress inflammation and repair nerve tissue for people with Multiple Sclerosis, researchers announced Thursday.…

A new clinical trial in Ottawa and Winnipeg will investigate the ability of stem cells to suppress inflammation and repair nerve tissue for people with Multiple Sclerosis, researchers announced Thursday.

“The MS Society of Canada is proud to be investing in the first Canadian clinical trial studying the ability of mesenchymal stem cells to treat multiple sclerosis,” Yves Savoie, President and CEO, MS Society of Canada, said in a media release. “As Canada has the highest rate of the MS in the world, we are excited that Canadian researchers are among the leaders in developing a novel and effective cell-based treatment.”

The $4.2-million clinical trial, co-led by the University of Ottawa’s Dr. Mark Freedman and Dr. James J. Marriott of the University of Manitoba, is called MESCAMS (for MEsenchymal Stem cell therapy for CAnadian MS patients). It will involve 40 patients — 20 in each city — who will receive either mesenchymal stem cells extracted from their own bone marrow or a mock solution to see if the effects of the stem cells are real or triggered by a “placebo effect.”

For information about clinical trial eligibility and enrollment, click here.

“This is absolutely the kind of clinical trial that Canadians will see more of with the Canadian Stem Cell Strategy & Action Plan,” said James Price, CEO & President of the Canadian Stem Cell Foundation. “The Strategy is about bringing more clinical trials to Canada so that Canadians have early access to therapies that are proven to be safe and effective.”

As reported by Elizabeth Payne in the Ottawa Citizen, recent publicity around hockey legend Gordie Howe’s experimental stem cell treatment in Tijuana for stroke has focused attention on a growing international stem cell tourism industry offering unproven, untested therapies. “There is so much noise about stem cells in general and the hype that surrounds them, we are doing this study properly so we can answer the question for once and for all,” Dr. Freedman told the newspaper.

“Canada has a world-class stem cell sector and we are poised to bring new treatments to the clinic,” said Mr. Price.  “That’s why implementing the Action Plan is so important. It will mean that rigorously tested, safe and effective therapies are developed right here at home.”

Readers of this blog may be familiar with the story of Jennifer Molson who took part in a previous stem cell trial in Ottawa conducted by Dr. Freedman and Dr. Harry Atkins.  She is now free from all her previously debilitating MS symptoms. Unlike that study, which involved transplantation of hematopoietic stem cells to re-boot the immune system, there is no requirement for chemotherapy in MESCAMS.

The MESCAMS trial is part of a larger, international research effort led by Dr. Freedman and Dr.  Antonio Uccelli at the University of Genoa in Italy. The international effort links researchers from nine countries who are undertaking parallel research.

Funding for the trial, announced by the MS Society of Canada and the Multiple Sclerosis Scientific Research Foundation, is also being provided by Research Manitoba and A&W Food Services of Canada

 

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28
Feb 2017
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UK study further substantiates stem cell treatment for MS

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Last summer we blogged about a team at The Ottawa Hospital that had proved a stem cell/chemo combo treatment could halt the progression of multiple sclerosis (MS) and — in some cases — help patients recover from the autoimmune disease.…

Last summer we blogged about a team at The Ottawa Hospital that had proved a stem cell/chemo combo treatment could halt the progression of multiple sclerosis (MS) and — in some cases — help patients recover from the autoimmune disease.

Now comes news from the United Kingdom that further substantiates the work of Drs. Harry Atkins and Mark Freedman in showing that using bone marrow stem cell transplants to rebuild an MS patient’s immune system can prevent the disease from worsening and dramatically improve mobility and freedom from pain for some.

The Atkins-Freedman study, published in the prestigious Lancet journal, focused on two dozen patients treated over a decade. The UK study, published last week in JAMA Neurology, reviewed 281 patients tracked over five years. Led by Dr. Paolo Muraro of Imperial College London, the study found the treatment prevented symptoms of severe disease from worsening for five years for almost half of the patients treated.  Drs. Atkins and Freedman co-authored the UK study and  results from their work were included in the review.

Among patients with relapsing MS, nearly three in four saw no worsening of their symptoms five years after treatment, while younger patients with less severe forms of the disease were more likely respond to the therapy. Most of the patients, though, had progressive MS, which is more severe.  Among them, one in three experienced no worsening of symptoms, according to a report by Imperial College.

MS occurs when a person’s immune system misfires and begins attacking nerves in the brain and spinal cord. Currently, there is no treatment for sever, progressive MS.

In essence, the new approach, which is called autologous hematopoietic stem cell transplantation, involves extracting the patient’s own bone marrow stem cells and fortifying them, then destroying their immune system through chemotherapy. The stem cells are then transplanted back into the patient to rebuild the immune system — ideally without the disease.

The stem cell/chemo treatment is not for everyone who has MS — young people with more robust stem cells tend to respond better than older patients — and it comes with risks. Eight patients died following the treatment.

Dr. Muraro said the risks must be weighed against the benefits: “We previously knew this treatment reboots or resets the immune system – and that it carried risks – but we didn’t know how long the benefits lasted. In this study, which is the largest long-term follow-up study of this procedure, we’ve shown we can ‘freeze’ a patient’s disease – and stop it from becoming worse, for up to five years.”

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09
Jun 2016
6 Comments

Drs. Harry Atkins and Mark Freedman of The Ottawa Hospital

Ottawa team proves stem cell/chemo combo halts MS

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A team led by two doctors from The Ottawa Hospital has proved that stem cells, used in combination with chemotherapy can halt the progression of aggressive multiple sclerosis (MS) and — in some cases — help patients recover from the autoimmune disease.…

A team led by two doctors from The Ottawa Hospital has proved that stem cells, used in combination with chemotherapy can halt the progression of aggressive multiple sclerosis (MS) and — in some cases — help patients recover from the autoimmune disease.

In a paper published today in the prestigious medical journal The Lancet, Drs. Harry Atkins and Mark Freedman show that bone marrow stem cell transplants can eliminate all signs of damaging brain inflammation by rebuilding a patient’s immune system.

MS occurs when a person’s own immune system attacks the myelin protective sheath that covers nerves, causing inflammation and damage that inhibits communication between cells in the nervous system — the brain and spinal column.

The researchers took bone marrow stem cells from patients with aggressive MS and purified them in a laboratory. After the patients underwent extreme chemotherapy, their robust stem cells were returned to rebuild new immune systems.

The clinical trial involved 24 patients and tracked their progression over several years. According to The Ottawa Hospital’s news release, after the treatment:

  • Not a single participant experienced a clinical relapse (zero relapses in 179 patient-years), whereas before treatment, the participants experienced an average of 1.2 relapses per year.
  • Not a single new active inflammatory lesion could be detected in the brains of any of the participants.
  • Not a single participant required MS-specific drugs to control their disease.
  • 70% of participants experienced a complete stop in disease progression.
  • The average rate of brain shrinkage, typically a measure that correlates with MS progression, returned to levels associated with normal aging.
  • 40% of participants experienced some lasting reversal of such symptoms as vision loss, muscle weakness and balance problems.
  • Some participants were able to return to work or school, regain the ability to drive, get married and have children.

In Jennifer Molson’s case, the treatment eradicated all traces of the MS that had taken over her life. Prior to taking part in the study, she was receiving 24-hour care at the Rehab Centre at the Ottawa Hospital, “learning to how to live with my disability.” She had quit her job and could only walk with the help of forearm crutches or a walker. Life in a wheelchair was imminent.

Now free of MS symptoms for more than a dozen years, Ms. Molson has resumed a demanding career and a busy schedule. As she described in the book Dreams & Due Diligence:  Till and McCulloch’s Stem Cell Discovery and Legacy, “I downhill ski, I drive a standard. I can skate. I can dance … Am I cured? I like to use that word. They (Drs. Atkins and Freedman) don’t like to use that word. They’re calling it a lasting remission. I’m very lucky. I got a second chance at life.”

While his recovery was less dramatic, Vancouver’s Aaron Prentice said his quality of life is much improved: “I am now five years post-transplant,” he wrote in the Foundation’s Cellections newsletter last year. “I have not had a relapse and no longer require a cane. My gait has improved significantly and continues to do so. My arms are symptom free.”

The Ottawa Hospital, the MS Society of Canada and the University of Ottawa have produced a video about the clinical trial that can be seen here: https://www.youtube.com/watch?v=vW86owclZes&feature=youtu.be

Marjorie Bowman, trial coordinator and advanced practice nurse at The Ottawa Hospital, expressed her admiration for the remarkable “courage and dedication” demonstrated by the trial’s participants. “We thank the patients from across Canada who participated in this clinical trial, as well as their family members,” she said.

The treatment, Dr. Atkins explained in Dreams & Due Diligence, is a variation on the bone marrow ablation that leukemia patients undergo.

“MS is an autoimmune disease where the immune system is attacking a patient’s brain. The simple concept behind our treatment is, ‘Let’s just get rid of the old immune system and put back the seeds, let a new one grow and hope that it won’t learn the same lesson.’

“Because stem cells don’t carry over immunologic memory. That’s really what we have tried to do. We had a track record for doing transplants for leukemia and knew how we could damage the immune system to remove it. We just applied the lessons we learned in care of patients with leukemia and applied them to this new setting.”

Not for everyone

However, the therapy is not for all MS patients.

“It is only used in very severe cases because participants face a significant risk of infection and other side-effects, including death,” Dr. Atkins said in the media release. “The risks are similar to those faced by leukemia patients undergoing this kind of treatment.”

Indeed, one participant in this study died of liver failure due to the treatment and another required intensive care for liver complications. The treatment regimen was modified to reduce toxicity, but all participants still developed fevers, which were frequently associated with infections.

People who are interested in this therapy should speak with their own neurologist, who can request a referral to The Ottawa Hospital MS Clinic or another major hospital with experience in this area. The Ottawa Hospital cannot treat people without valid Canadian health coverage.

While The Lancet paper is focused strictly on the MS patients, Dr. Atkins has also seen some success treating patients with other immunological disorders such as Stiff Person’s Syndrome, neuromyelitis optica and Crohn’s disease.

And Dr. Freedman has gone on to co-lead a new chemo-free MS clinical trial using mesenchymal stem cells. “These cells have been shown, at least in early studies in humans, to repair — period,” he explained recently. “But they happen, at the same time, to have an anti-inflammatory effect. So they may be able to accomplish both things together. Without the need of any chemo, there is very little risk to the people taking it.”

A turning point for MS

Yves Savoie, President and CEO, MS Society of Canada, called publication of the paper “a turning point” in MS care. “What started as a bold idea has translated into a treatment option for people living with highly active, relapsing MS.”

The $6.47 million trial was funded by the MS Society of Canada and its affiliated Multiple Sclerosis Scientific Research Foundation. The research was also supported by The Ottawa Hospital Foundation, The Ottawa Hospital Department of Medicine and Canadian Blood Services.

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16
Dec 2013
15 Comments
Jennifer Molson 2 Capture

‘A second chance at life’

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This is the third in a series of blog posts about the success the Ottawa Hospital’s Dr. Harry Atkins is having in treating autoimmune disorders with stem cell bone marrow transplantation.  

This is the third in a series of blog posts about the success the Ottawa Hospital’s Dr. Harry Atkins is having in treating autoimmune disorders with stem cell bone marrow transplantation.  We previously featured Tina Ceroni, a Burlington Ontario athlete whose life was sidelined by a rare disease called Stiff Person Syndrome, and Jelissa Morgan, a patient with a crippling condition called neuromyelitis optica who is about to resume her nursing career. Today we share the story of Jennifer Molson, who has been free of all traces of Multiple Sclerosis for 11 years.

MS symptoms eradicated by stem cell treatment


Jennifer Molson
was working full time and going to school at night in the hope of becoming a police officer. It was 1996 and she was turning 21.  When her left arm started going numb for no apparent reason, it was put down to carpal tunnel syndrome.

When thingsbegan to get worse, doctors considered other possible causes. An MRI confirmed it was Multiple Sclerosis.

Jennifer’s disease came on slowly and tended — as MS does — to wax and wane. Within five years, however, it had taken control of her life.  Training for the police was out.  Full-time employment became part-time work. Eventually she was unable to work at all. Or drive a car. The once unstoppable young woman needed help doing the simplest tasks, such as cutting her food and getting in and out of the shower. “I couldn’t do anything,” Jennifer says now.

She was getting 24-hour care at the Rehab Centre at the Ottawa Hospital, “learning to how to live with my disability.” She could walk only with the help of forearm crutches or a walker. Life in a wheelchair was imminent. Her neurologist, Dr. Mark Freedman, feared that without some kind of an intervention, “she would become very disabled very quickly.”

Intervention came in the form of a stem cell bone marrow transplant to rebuild Jennifer’s immune system where the MS lurked.

For more than a dozen years, Dr. Freedman has partnered with Dr. Harry Atkins, a clinician/researcher, in treating MS patients with stem cell bone marrow transplants. In essence, they take stem cells from an MS patient and purify and fortify them. The patient undergoes extreme chemotherapy to all but annihilate their diseased immune systems. The robust stem cells are then returned to the patient to rebuild a new — hopefully disease-free — immune system.

Tried about 30 times so far, the treatment has shown strong success in stopping the progression of MS.  It has also been successfully used in other autoimmune disorders such as Crohn’s disease, neuromyelitis optic and Stiff Person Syndrome.

In Jennifer’s case, the stem cell transplant did much more than shut down the MS. It eradicated all traces of it. The crutches and walker are long gone. She’s back working full time.  As she described in the book Dreams and Due Diligence:

“I downhill ski, I drive a standard. I can skate. I can dance, but not well … I have no rhythm. That has always been the case. Am I cured? I like to use that word. They (Drs.  Freedman and Atkins) don’t like to use that word. They’re calling it a lasting remission.”

Now free of all traces of MS for more than a decade, Jennifer is an active advocate for stem cell research and development in Canada, the country where stems cells were discovered. She has lent her support to the Campaign for a Canadian Stem Cell Strategy, which is developing a plan for Canada to follow through on its outstanding research legacy to produce more of the kinds of new treatments she has benefitted from.

“I’m very lucky. I got a second chance at life. The Canadian Stem Cell Strategy will allow what happened to me to happen for thousands more Canadians who are dealing with currently incurable diseases.”

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19
May 2010
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MS and Stem Cells: It amazes me that I have a new immune system

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The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to determine whether transplanting bone marrow stem cells in people with MS can stop the disease.

The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to determine whether transplanting bone marrow stem cells in people with MS can stop the disease. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long focus on MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, Cathy Nabuurs, a patient in the study, shares her MS stories.

Q: When were you diagnosed with MS?

A: I was diagnosed with MS in January of 2001 at the age of 28. I was beginning my career as a speech-language pathologist and had been married for about three years.

Q: What kind of symptoms prompted you to see a doctor?

A: I was experiencing vertigo, numbness and tingling in my extremities. Later on I had dexterity issues and difficulty with gait, muscle strength, pain and fatigue.  When I was first diagnosed with MS, I was given a disease modifying drug. It was not very effective for my type of MS and my disease continued to worsen. In 2006, I was told that I had progressed to a more aggressive form of the disease known as Secondary Progressive MS.  My body was now experiencing continuous progression without attacks or remissions.

Q: When and how did you find out about the stem cell trial?

A: I originally heard about the stem cell trial on a local news radio show. This was before I was officially diagnosed with MS but was experiencing symptoms and suspected something neurological.

Q: What was the process of being accepted into the trial?

A: There were three factors: I had to be physically fit (with normal function of the heart and lungs), I had to have Secondary Progressive MS, and I had to have had unsuccessful results with a disease modifying drug.  I was accepted in January of 2007 and my family relocated to Ottawa for a year. My husband was able to come with me and my parents also were extremely helpful and supportive. They moved to Ottawa and lived with us for four months. This was great for our children because they had some sense of normalcy in their lives.  Before departing for Ottawa, our friends and family organized a benefit event which raised significant money and was a huge help. Without all the support, this treatment would have been much more difficult.

Q: How did you prepare to enter the study?

A: My son was five years old when I entered the study and I needed to explain to him the purpose of our move and what was going to happen to Mommy in the simplest of terms. It was very difficult for me as a mother with two small children (ages five years and nine months).   The worst case scenario  was the slight possibility that I would die. Dr. Freedman and Dr.Atkins made sure that we didn’t make the decision lightly, which I greatly appreciated. And I was the 16th subject in the study, so I felt very encouraged. Physically, I had to undergo many tests and procedures to ensure that my body was up for the treatment. At each stage of testing, there was a chance that I would no longer be eligible for the treatment. The doctors had to be certain that my body was strong enough to make it through the chemotherapy. I was very nervous that the results of this testing would not be favourable.

Q:  What were your expectations going into the study?

A: I was given a copy of the treatment protocol to review. Dr. Atkins and Dr. Freedman were very helpful with my questions. and reviewed each step so that I could fully absorb the information. This was extremely helpful and comforting.

Q: What was the treatment like?

A: It was a very difficult procedure, but also very beneficial and life changing.   The first step of this process involved having my medical files submitted to the ethics committee. After we received their approval, I had to undergo many tests and procedures prior to moving to Ottawa, to ensure that I was physically fit for the transplant.  In May 2007, the first significant medical procedure to be performed was a bone marrow harvest. It was performed as a precaution so that my bone marrow could be used to re-grow my existing immune system if the new one did not grow as expected or if for any reason the transplant was unsuccessful. The next step was the harvest of my stem cells which were then purified and frozen until my body was ready for them.   The following step was the most risky and difficult. It was the eradication of my existing immune system through heavy doses of chemotherapy (25 doses), in order to make way for a new, healthy immune system.  After the last day of chemo and a day of rest, I received my purified stem cells.

Q: How did you feel  throughout the different steps of the study?

A: I was very nervous prior to starting the trial, however, once I arrived in Ottawa I knew that I was in very good hands. The doctors and nurses were very sensitive and caring to me and my family.  The hardest part for me, emotionally, was seeing my children while I was in the hospital receiving the chemotherapy. It was wonderful to be able to see them on a regular basis, but it was tough to watch my oldest child, Ethan, who was five years old at the time. During our talk before we left for Ottawa, I explained to him why we were moving. This treatment was going to make Mommy better. This is why it was so difficult for him when he saw the effects of the chemotherapy. The look on his face clearly revealed his thoughts that Mommy was not getting better, only worse. It was also very hard for me to see my one year old daughter as well, because I wasn’t able to really hold her.  During the chemotherapy treatment, I was very ill. On one particular day, I remember saying to my husband that I was finished with the chemotherapy and I wanted to go home. My husband looked at me and said “No…you started this ride and now you have to finish it”. I knew this deep down, but it was just a very hard day and I needed a push.

Q: What were the outcomes of the study for you?

A: The biggest change that I saw three months post transplant, was that I was no longer nauseated and I could keep my food down. Halloween night was the first time I felt strong enough to eat and keep food in my stomach.  I think that it was sheer Mommy determination that helped me get through trick or treating with my husband and children.  Last year, I was feeling stronger, but my immune system was still fairly new, and I would pick up colds and flues very easily. I was not able to receive the flu shot until this year because of the age of my immune system. This year, I feel terrific. I have had only a few colds.  I feel stronger and as a result I am able to exercise and work a little bit, without getting ill.  This August will be my third year anniversary of the stem cell transplant. There have been improvements, most noticeable has been the decreased fatigue.  Prior to the transplant, I had to have naps at least five days of the week. Now, I don’t nap unless I am sick with a cold or if I’m extra busy with my children (ages 3 and 8).  I’ve also noticed increased strength in my legs.  The indisputable proof that this treatment has been successful is in the results of my bi-annual MRI scans.  My brain and spinal cord show no new signs of the disease as there are no new lesions on any of my MRIs since the treatment.

Q: How has the study affected your life?

A: I have a new lease on life which is hard to put into words.  My family and I have been given a second chance and I will always be extremely grateful for this and indebted to the doctors, nurses, family and friends who helped us make this a reality.   At my last check up in Ottawa in February, my rating on the MS disability scale was a 2.0. Prior to starting the study, I was a 3.5.  The transplant was successful and today I have an immune system which shows no signs of disease activity.

Q: What are your hopes for the future?

A: It would be nice to have more myelin repair, but I would be very happy if my body can stay the way that it is at this present time.  I am just so relieved and overjoyed that I can play an active part in my family’s life. Without the support of my family, I would not have been able to get through the treatment. They helped me to fight this illness and the effects of the chemotherapy in the hospital.

Q: What do you hope people take away from your story? What do you want people to know about the trial and about stem cell science?

A: I would like people to know that there is hope. I am living proof of the success of this trial. I know that I am extremely fortunate and I will never take that for granted.  I look at the results of this trial as miraculous. It still amazes me that I have a new immune system and my body has no memory of the MS. Sure I have the old lesions to contend with when I am ill or tired, but my hope is that they too will fade away physically and emotionally.

Cathy Nabuurs and her family were recently named the 2010 MS Family of the Year for P.E.I. Read about it here.

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27
May 2010
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MS and Stem Cells: These scientists are on to something

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The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to determine whether transplanting bone marrow stem cells in people with MS can stop the disease.

The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to determine whether transplanting bone marrow stem cells in people with MS can stop the disease. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long focus on MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, Sue-Anne Lecompte, a patient in the study, shares her story of MS.

Q: When were you first diagnosed with MS?

A: I was 38 when I was first diagnosed with MS. It was the spring of 2003 and I had been living a pretty active life — building a career, and a home and life with my husband.

My first attack started on a Friday and progressed for seven days with a vengeance until I could no longer walk, talk or use the left side of my body. This resulted in my first five-month stay in the hospital. It took another two or three such hits and a lumbar puncture to confirm the disease. Then I began a three-month stay at a rehabilitation centre to relearn how to walk, use my left hand and speak.

In the first months of 2004, my MS hit again and again. I became quite good at relearning each time what had been lost. Over and over this went on until I received the stem cell transplant in 2009.

While enduring this five-year carnival ride, I was treated with steroids, injectables and chemotherapy. None of these treatments seemed to stabilize or even modify the disease. It just kept hitting – different hues of the same type of stuff, with varying degrees of handicap.

Q: How did you find out about the Canadian MS Bone Marrow Research Study?

A: I found out about the study after watching a story on W-5 in 2004. I met with Dr. Atkins for a chemotherapy treatment in 2005, and Dr. Freedman that same year, to inquire about what I had seen. At that time, Dr. Freedman indicated that I would be using a wheel chair full-time within five years if the disease continued at the same rate. But luck had turned my way and I had the chance to hear about this research study from “the horse’s mouth.” Talk about two lucky appointments. I was accepted into the trial in 2008, five years after I had first been diagnosed.

Q: How did being a patient in the study affect your life?

A: It was my first experience as a patient in a research study, and the implications of this were huge. The study always came first. There were hospital visits, tests and an immense amount of recovery time. My husband turned into my chauffeur, my cook, my second set of ears, my sounding board. Luckily, we live in Ottawa so we didn’t have to move for the trial, but the study still took its toll, financially, time-wise and emotionally.

Q: How did you prepare to enter the study?

A: I informed friends and family that I would need support and understanding, and that this study was pretty dangerous. Given the chance of death, I prepared a will.

Physically, I stayed as healthy and fit as possible. I underwent many medical tests. But I was totally available because I had been dreaming about being healthy for a long time and I was willing to do anything to fulfill that dream.

Q: What were your expectations and fears going into the study?

A: I had neither fear nor expectation. The study was totally transparent and I thought it made perfect sense. Nothing in life is without chance and I was willing to take any chance to be healthy. Furthermore, I believed in the research and its conclusions. It was my chance to alter the course of this hateful disease.

Q: What kind of changes did you see in yourself after getting the stem cell transplant?

A: Directly after the treatment, I could wiggle my toes and walk 400 metres with three short rests. After three months, I could cook my own meals, bathe myself and walk 400 metres without stopping and with no leg brace or cane. Six months after the treatment, I could walk 800 metres without stopping and without support. I could put on my own earrings and chew gum, which I hadn’t done in seven years.

Q: What do you want people to take away from your story? What do you want them to know about stem cell science?

A: This treatment works. It’s not easy and you must commit wholeheartedly, but I want people to know that these scientists are on to something.

This past Easter, one year and three months post-transplant, I wore high heels for the first time in seven years. Who knows what lies ahead for me? I do know that I can now make plans for tomorrow!

Sue-Anne Lecompte is married to Gilles. She loves the outdoors, her pets and most of all life. She believes her stem cell transplant has allowed her to make plans for a new tomorrow.

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26
May 2010
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MS and Stem Cells: Time is Brain

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The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells.

The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long salute to MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, an interview with Dr. Mark Freedman.

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