The Global Community of Parkinson’s

This blog post was originally written for the WPC Blog, March 26, 2018

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One of the great things about the Parkinson’s Community is that it is truly global.  There is research going on in many different countries, often with researchers from more than one country collaborating on a project.  As a result, in the last few years there have been many new theories about what causes PD and how to treat it.  Trying to keep up with the latest “breakthrough just about ready to happen” can be daunting.  But we are getting closer, maybe even to the point where we can reverse some of the damage in our braincells.

On another level, Parkies around the world have connected through the internet in a way that that no one could have imagined 20 years ago.  The many Facebook groups provide forums for us to get to know one another, share experiences good and bad, learn about promising new treatments, participate in clinical studies, problem solve and more.  Blogs have allowed many of us to express how we feel and explore new theories about treatment and care.  We have become more well-informed patients, ready to make the most of our appointments with our Movement Disorder Specialist (MDS).   We know about the research going on in other countries and about different treatments that may not be offered in our home towns.  There are many people that I have met through my blog and the various FB groups that I can truly call friends and I look forward to seeing them next year in Kyoto.

For the last two weeks, I have been traveling around Israel and have had the privilege to meet several individuals who, because of this global community, are truly making a difference for those of us with Parkinson’s Disease.

On a cold, rainy night in Jerusalem, Debbie Shapiro came to meet me at my hotel.  What Debbie has accomplished in the last 18 months since she attended the WPC in Portland with Dr. Tanya Gurevitch (see below), is amazing. Debbie, a mother of 9 originally from San Francisco who has PD, came home determined to start a program for Persons with Parkinson’s (PwP’s) in Jerusalem. Tikvah4Parkinson, (Tikvah means Hope) provides exercise programs, boxing, support groups, etc. for  PwP’s.  Her program has been so successful that she is is moving into a larger space and is looking for help to manage the program.  She told me that many people in Israel believe that they will only live 5 years after their diagnosis and do little to improve their quality of life.  She wants that to change.  Because of her passion for this project, the people attending her programs are all showing improvement in their symptoms and their outlook on life.

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Prof Tamir Ben-Hur, chair Neurology and Dr. David Arkadir, Hadassah Medical Center

The next day I met with Dr. David Arkadir at Hadassah Ein Karem Medical Center. Dr. Arkadir is the top Parkinson’s researcher at Hadassah and is on the board of Tikvah 4 Parkinson.  He told me about several research projects that he is working on now. The first is a double-blind study testing the artificial sweetener Mannitol.  Earlier studies with animal models have shown that it prevents alpha-synuclein from accumulating and even removing it from the brain.  Dozens of patients had already reported benefits while taking it, so Hadassah applied for a grant from the Israeli Ministry of Science to investigate this further to confirm previous anecdotal stories of the benefits of Mannitol.

A second study is just getting underway to look for new genes related to PD, mostly looking at young onset patients who have relatives with PD.  They have already found a few candidate genes.  Another study is looking at guided physical therapy, collaborating with a company that developed user-friendly therapy that can be done at home combined with cognitive therapy.

One anecdote.  When I told Dr. Arkadir that I thought many Parkies do too much, and that I was doing too much, he said “its good, its what keeps you well.”

Finally, I met with Dr. Tanya Gurevitch who is the director of Parkinson’s Disease and Neuroautonomic Service at the Movement Disorders Unit at Tel-Aviv Sourasky Medical Center,  a Center of Excellence for the Parkinson’s Foundation.  She is also on the board of Tikvah 4 Parkinson.  According to Dr. Gurevitch, the clinic sees about 2000 patients from all over the country.  They look at PD from all sides, not just as a movement disorder but as a multi-factorial and multi-symptom disease, which also affects the entire family.   They offer a multidisciplinary approach for patients who live in the Tel Aviv area, which includes physical therapy, occupational therapy, speech therapy, dance, and more.  Dr. Gurevitch says there are no unimportant symptoms and encourages her patients to report everything.  The department provides workshops for the newly diagnosed and their care partners are encouraged to attend with them.  They are doing a lot by phone with patients outside of Tel Aviv area, in between their visits to the center  3-4 times a year.  She agreed with Debbie Shapiro about the prevalent thinking in Israel that you only have 5 years after your Parkinson’s diagnosis.  They are working to change that perception, encouraging more exercise along with medication to improve quality of life.  People don’t want to exercise, but if they are told it is their medicine, they are more likely to do it.

In addition,  the center was beginning a study for people with the GBA gene mutation.  GBA is found predominantly in Ashkenazi Jews, making Israel a logical place to be one of the test sites chosen because of its large Ashkenazi population.    This international study will be looking for a disease modifying treatment for people with the gene mutation.

Treatment is Global and Research is Global

Dr. Gurevitch stated that “Treatment is Global and Research is Global.”  For example,  she just published a paper on the validation of the Hebrew version of the UPDS scale.  The 50th patient was just recruited to participate in a study to validate the new European (EPDA) scale, which is only18 questions compared to the US version which has more than 50.

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Tel-Aviv Sourasky’s Movement Disorders Unit is a  Parkinson Foundation Center of Excellence

I asked why she specialized in PD.  Dr. Gurevitch said that for her “it is real neurology, because you look at the symptoms, you can diagnosis it because of your education and knowledge, not an MRI or some other test, and you can use your creativity and the art of the treatment to find the special thing for the special patient.  Parkinson’s is a grateful disease, and if you are treating it good, it will be good.”

To see a video about Tivkah4Parkinson, click here.

Stem Cells to the Rescue

I have been involved with Hadassah, the Women’s Zionist Organization of America for years.  I have visited the hospital in Jerusalem numerous times and even saw the head of Neurology, Prof. Tamir Ben-Hur, as a patient.  The stem cell research in Israel is far ahead of what we are doing here in the United States and in other countries.  Just last month, a break-through was made in ALS research.

New protocols for transplanting stem-cells are the key to this research.

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This is an image of stem cells being turned into brain cells affected by Parkinson’s.Credit: Parkinson’s UK 

Here is the latest news on Parkinson’s Disease research from Hadassah which is also looking at these protocols.

February 2016
From Treating Symptoms to Restoring Health: Parkinson’s Progress at Hadassah

With the long-term goal of replacing lost neurons and restoring function permanently to patients with Parkinson’s disease, Hadassah Medical Center physician/researchers in the Human Embryonic Stem Cell Center are uncovering crucial factors that affect the success of stem cell therapy.

In Parkinson’s disease, progressive degeneration and loss of dopamine-producing neurons in the mid-brain cause motor and cognitive deficits, since dopamine is  essential to the normal functioning of the central nervous system. Whereas current treatment for Parkinson’s disease can only alleviate symptoms, regenerative therapy using stem cells targets the production of new dopamine.
As Prof. Benjamin Reubinoff, head of the Stem Cell Center, explains: “To be able to produce a reasonable number of dopaminergic neurons from human embryonic stem cells, there is a need to refine some previously described protocols for directing the cells to differentiate.”

One of the factors Hadassah’s researchers are investigating is how the extracellular environment affects the process of differentiation. The culture plates, Prof. Reubinoff brings out, “provide an environment which is profoundly different from that of the intact soft tissue of the brain.” With this in mind, Dr. Sharona Even Ram from the Stem Cell Center developed a method to grow cells in modified 3D soft culture conditions and compared the results to those achieved using the hard plastic plates. Subsequently, they followed changes on the cellular and molecular level along the differentiation process. “Indeed we found that soft and hard substrates have different capacity of supporting neuronal maturation,” reports Prof. Reubinoff.

Another challenge that scientists face in the stem cell differentiation process in culture (in vitro) is that some of the cells retain what is called their “stemness.”  In other words, they fail to mature, but at the same time they show high proliferation rates. These cells bear the risk of forming tumors after transplantation, which has been seen worldwide in animal models. Therefore, Prof. Reubinoff and Dr. Even Ram are investigating techniques to “clean the culture,” eliminating these cells before transplantation takes place.
Having characterized the changes in cell components that normally occur as stem cells differentiate, the researchers are able to identify specific elements that mature cells carry which endow them with increased resistance to toxic agents. They found that immature proliferating cells do not contain these elements, and therefore can be eliminated by specific toxic agents. One of the methods they are using, Prof. Reubinoff reports, has been recently patented in the United States.

A third issue that Hadassah researchers have tackled is the enhancement of the neuron’s survival once it has been transplanted to the host tissue.
A challenge in this step is that the compromised brain of the Parkinson’s patient may not provide a hospitable environment for the newly transplanted cells. To deal with this issue, they are working toward supplying extracellular materials that will enable the cells to attach to the host and survive, long-term. Prof. Reubinoff reports that Hadassah’s team is collaborating with a group from Tokyo, Japan to test materials for their ability to support neuronal growth and maturation, such as laminin peptides. They are also involved in a joint exploration with a group from Nottingham, United Kingdom to test biodegradable micro-particles as a cell delivery method, which would facilitate a slow release of growth factors–here again enhancing the cell’s survival potential. This is being tested in culture and in an animal model.

While there are clearly hurdles to overcome in ensuring the success of regenerative therapy for Parkinson’s disease, stem cells hold great promise for a transformation from treating symptoms to restoring health.

News you can use about Stem Cells:

For more information on stem-cell research for Parkinson’s Disease, ALS and other neurological disorders at Hadassah, go to http://www.hadassah.org/news-stories/parkinsons-progress.html

http://www.hadassah.org/news-stories/deep-brain-stimulation.html

You can view Prof. Ben Hur’s TED Talk on Stem Cells here:  Stem cells — protectors of the brain

From Science Daily, new stem cell research offers up new clues as to how Parkinson’s spreads from cell to cell:   sciencedaily.com/…016/02/160218132257.htm

 

An Important Breakthough for ALS

“In the clinical trial of intrathecal infusion of stem cells there were no major adverse effects, and close to 90% of patients showed slowing in the progression of disease, as measured by their respiratory function or their general motor disability”
—Principal Investigator Dr. Dimitrios Karussis, MD, PhD, Sr. Neurologist, HMO Neurology

 

First, I want to thank all of you who have been following me for the last 10 months.  You helped me reach the magic number of 100 followers!!!  Thank you for all of your support in the last year.  It has been an exciting experience for me watching how the internet brings us all so much closer.  This blog has been read in countries all over the world and several of the posts have been re-posted on other sites.  I am looking forward to sharing my thoughts and news about Parkinson’s Disease with you again this year.

Second, and more important, as a past president of Hadassah Southern California and a member of the Hadassah National Board, I am proud to share the following news with you.  Hadassah, The Women’s Zionist Organization of America announced yesterday that a new ALS treatment utilizing a stem cell infusion protocol performed at Hadassah Medical Organization (HMO) and developed by the US/Israeli biotech company BrainStorm Cell Therapeutics (NASDAQ: BCLI), has significantly slowed the progression of Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s Disease).  For the full text, click here.

This treatment has the potential to be used for other neurological disorders, such as Parkinson’s Disease and MS.  Israel has long been in the forefront of stem-cell research since its inception and there has been much hope for a breakthrough in Parkinson’s research ever since.  I have actually been seen at Hadassah Hospital in Jerusalem twice by the head of Neurology, Professor Tamir Ben-Hur.  When I last saw him three years ago, he had nothing new to report about stem-cell treatment for PD.  Delivery of stem-cells was the big issue.  At the time,  they were trying to inject stem cells directly into the brain, but unfortunately, most did not survive the transplant.  With this new treatment, there is more hope for the future.

On Thursday, I will have the privilege of meeting with Dr. Dimitrios Karussis, MD, PhD, Sr.

Neurologist, HMO Neurology, who is the principal investigator in the study.  I have so many questions for him and I hope to be able to share more news with you after our meeting.

Watch Monday’s press conference