Israel: Commitment to ALS

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Dear Patients, Friends and Colleagues,
We arrived on May 14, Israel’s Day of Independence, for a
three week visit to explore research, advocacy and current
)32!%,
were strung across streets and balconies. Blue lights glittered
auspicious beginning.
A vibrant, energetic country with a pioneering spirit and dedication to the sciences
4 *%253!,%BARBARA AND STEPHEN BYER
JERUSALEM, ISRAEL
JUNE 2011
One of the oldest cities in the world, teeming with diversity, a holy city to the three
major Abrahamic religions -- Judaism, Christianity and Islam
Hadassah Medical Center
Paragon of medical excellence, both within Israel and internationally
BrainStorm Cell Therapeutics
Developers of the NurOwnTM mesenchymal stem cell protocol now in clinical trial at
Hadassah Medical Center
Cell Cure Neurosciences Ltd.
Cell therapy protocols for neural degenerative diseases from Human Embryonic Stem Cells.
Hebrew University
Superb research and teaching institution dedicated to Health Sciences
Monarsen
Sclerosis.
Our deep appreciation is extended to the Sharna and Irvin Frank Foundation for their extensive
12 4%,!6)6
With over 3.3 million residents, Tel Aviv is the country’s largest city and is the
Tel Aviv University
Israel’s largest university and a major center of teaching and medical research
The Weil Laboratory
Weizmann Institute
One of the world’s leading multidisciplinary research institutions at graduate levels only
CTCI (Cell Therapy and Cancer Immunology)
Stephen and Barbara Byer
ALS WORLDWIDE
18 (!)&!
As Israel’s third largest city, this major seaport has a 3000 year old history
and is home to the Bahai World Center.
Technion Institute of Technology
Amyotrophic Lateral Sclerosis, known also as Lou Gehrig’s disease, is one of the most challenging of all neurological
diseases. It has confounded the scientific community for more than 160 years. Patients are robbed of their ability to
chew, swallow, drink, eat, breathe, speak, walk and move. ALS has been described as “a brief life in a glass coffin.”
No proven cause or cure exists at this time. Death within two to four years is, for most, inevitable. An estimated
750,000 patients across the globe, including all genders, cultures and ages, live with the disease at any given time.
Haifa’s Brain and Behavior Research Center combines neurobiology and psychobiology for
Alzheimer’s Disease and other motor neuron diseases
IsrALS (Israel ALS)
professional team.
22 !,37/2,$7)$%
A timeline of the history of our organization, 2008-2011, with a look into future endeavors
Israel has pioneered the development and use of laser surgical instruments, as well as a variety of
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Israel at the very forefront of international technological excellence.
The accomplishments of medical researchers and doctors in Israel is impressive. Among some of the
more important discoveries are the following: the discovery of the molecule trigger that causes psoriasis;
the development of the “Ex-Press Shunt” that provides relief for glaucoma; an innovative device that
helps the heart pump blood and has the potential to save lives of those with congestive heart failure;
Israel, a country slightly larger than Massachusetts, lies at the eastern end of the
Negev region, which covers almost half of the total area, is largely a desert. The Jordan
Galilee to the Dead Sea which, at 1,329 feet below sea level is the lowest elevation in
the world. The diverse population, as of January 2011, was close to 7.7 million people.
Sea of
Galilee
HAIFA
that citral, a plant oil, can cause cancer cells to self-destruct without harming healthy cells; Shulov
conditions; research is in process for the development of a vaccine against autoimmune diseases utilizing
the body’s own T-cells; researchers at Technion have developed an antibiotic that kills anthrax bacteria
There is archaeological evidence of settlements in Israel dating from nine thousand to
history are recorded in the Old Testament where its cultural, religious and national
identity was formed.
Archeology in Israel involves the systematic investigation of all the remains of the
country’s past – from prehistory to the end of the Ottoman rule. The profusion of
material remains as evidence of the many cultures that have left their imprint on Israel.
causes acne bacteria to self-destruct without damaging surrounding skin; a “bone glue” that reduces the
small intestine to diagnose cancer and digestive disorders.
Petach Tikva
West
Bank
TEL AVIV
Rehovot
JERUSALEM
Much of its diversity can be attributed to the large numbers of immigrants that have
arrived from throughout the world. Its physical presence has been maintained through
the centuries even after the majority was forced into exile. During the many years
Dead Sea
its bond with the land. With the establishment of the State of Israel in 1948, Jewish
independence, originally lost 2000 years earlier, was renewed.
Masada
The Interdisciplinary Center for Neural Computation at Hebrew University is a center
Today, Israel’s well-developed infrastructure of medical and paramedical research
leading brain scientists throughout the European Union. The Center hosts some 100 researchers from
Europe to train them in applying a multi-disciplinary approach to understanding the functions of the
brain. In Haifa, the Brain and Behavior Research Center has combined the disciplines of neurobiology
and psychobiology in its work on Alzheimer’s Disease, reinforcing the belief that both disciplines are
necessary for developing a cure for this disease.
is carried out by medical schools, universities and various government institutes and
laboratories, as well as by R&D departments of companies in the pharmaceutical,
high-level facilities are recognized throughout the world, with regular contacts
The Negev
variety of medical topics.
Sophisticated technology has become an integral part of modern diagnostic and
treatment procedures. Close cooperation between medical research institutions
Researchers at Technion and Rambam Medical Center have formed a team to create biological
pacemakers from human embryonic stem cells. Ultimately, the hope is that after a major heart attack,
these cells can be implanted and will restore function.
At the Weizmann Institute, a formidable research team has programmed the world’s smallest
computer in a test tube so that it automatically can detect the presence of certain cancers, diagnose them
and produce a drug molecule to kill the cnacer cells.
scanners and advanced microcomputer-supported devices, essential for accurate
diagnosis and effective treatment in critical situations, are exported worldwide.
Eilat
Gamida Cell Ltd. has developed a revolutionary treatment for leukemia using a stem-cell derived
product. When tested on terminal leukemia patients for whom other treatments had failed, remarkable
results were achieved. With conventional treatment, only 10% of the critically ill patients would have
been expected to survive a benchmark of 100 days. With this new treatment, 50% of the patients were
still alive at that point.
impressive, particularly because there are only between 700 and 800 Israeli patients suffering from this
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HADASSAH MEDICAL CENTER
with the Hebrew University of Jerusalem. Hadassah Medical Center
was founded by Hadassah, the Women’s Zionist Organization of
America and continues to underwrite many programs today.
*%253!,%The name Jerusalem means ‘Abode of Peace’ in Hebrew and “The
Holy Sanctuary’ in Arabic and is a holy city to the three major
Abrahamic religions -- Judaism, Christianity and Islam. The oldest
part of the city was settled in the 4th century BCE, making Jerusalem
one of the oldest cities in the world. During its long history, Jerusalem
has been destroyed twice, besieged 23 times, attacked 52 times, and
captured and recaptured 44 times.
Human habitation in the area can be traced back as far as 380,000
BCE and the archaeological records support the Biblical account of
David having defeated the Jebusites in a war and capturing the city
intact. David made the city his capital and his son, Solomon, built
the First Temple there. This event centralized religious authority and
religious practice throughout the Kingdom of the Jews in Jerusalem,
making the city even more important than before.
JERUSALEM
Hadassah is a medical organization that operates two University
Hospitals at Ein Kerem and Mount Scopus in Jerusalem, including
In 2005, Hadassah Medical Center was nominated for the Nobel
regardless of ethnic and religious differences, and its efforts to build
bridges of peace.
Hadassah Medical Center
Tower of David, Old City, Jerusalem
Petach Tikva
TEL AVIV
Rehovot
Early History
care in the then Ottoman-occupied Jerusalem. Two nurses set up a small public station
to provide maternity care and treat trachoma, a rampant eye disease in the Middle
East. By 1921, the American Zionist Medical Unit had grown to 45 medical health
West
Bank
tuberculosis treatment center was established in Safed.
center, opened on May 9, 1939. By March, 1947, attacks had become a common
occurence, threatening medical professionals and patients. On April 13, 1948, an
armored convoy of doctors, nurses, medical students, and other staff was ambushed,
killing 78 people in what is known as the Hadassah Medical Convoy Massacre. Under
the 1949 armistice agreement with Jordan, Mount Scopus was declared a demilitarized
enclave and operation of the hospital became impossible. The staff moved to temporary
JERUSALEM
Today, Jerusalem is one of Israel’s largest cities, both in population
Rothschild-Hadassah Hospital Nurses, 1939
extensive renovations, reopening in 1975. With over 300 beds and 30 departments and
clinics, the hospital serves all populations in Jerusalem without distinction.
Sea and the northern edge of the Dead Sea, modern Jerusalem has
grown far beyond the boundaries of the Old City. The beauty and
Masada
to experience the vitality and diversity. The deep sense of mankind’s
history exists in the roads, buildings and ruins. Every direction brings
with it a majestic image and a sense of hopefulness.
Anglican International School on Street of the Prophets in Jerusalem. In 1961, a
new medical complex was built in Ein Kerem in southwest Jerusalem supported with
funding from Hadassah Women’s Zionist Organization of America. Today the hospital
accommodates 700 beds, contains 130 departments and clinics in 22 buildings and
includes the Hebrew University of Jerusalem schools of medicine, dentistry, nursing,
public health, and pharmacology, as well as many modern research laboratories.
The campus synagogue is famous for its stained glass windows depicting the twelve tribes
of Israel, created and donated in 1960 by Marc Chagall.
The Negev
4
Jerusalem
“This is my modest gift to the Jewish people who have always
dreamt of biblical love, friendship and of peace among
all peoples. This is my gift to that people which lived here
thousands of years ago among the other Semitic people.”
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BrainStorm Cell Therapeutics
Enhanced Mysenchymal Stem Cell Implantation
BrainStorm is a publicly traded, US/Israeli based biotechnology company, established
in 2004, to focus on the development of innovative adult stem cell therapies for highly
transgenic models of autoimmunity. For many years, Professor Offen
Medical Research Center, Tel Aviv University. His work has
concentrated on the processes of cell death in neurodegenerative
from the Israeli Ministry of Health to proceed with a differentiated stem-cell based
therapeutic clinical trial. Approval from the Hadassah University Medical Center ethics
committe was obtained in May 2011. Guided by a passionate desire to see the results of
Daniel Offen, PhD
Head of Neuroscience Laboratory
Felsenstein Medical Research Center
Tel Aviv University
neurotrophic factor secreting cells.
of both Professor Daniel Offen and Professor Eldad Melamed. Their combined
research efforts in molecular and cellular neurobiology, neuropharmacology and animal
models of neurodegenerative diseases, form the basis of the BrainStorm clinical trials.
The NurOwn technology processes adult human mesenchymal stem cells that are
present in bone marrow and are capable of self-renewal as well as differentiation
achieved in-vitro differentiation of adult bone marrow cells, both animal and human,
into astrocyte-like cells capable of releasing neurotrophic factors, including glial-derived
cells along with intramuscular and intrathecal delivery makes NurOwn technology
cord injury.
to begin August 2011 with pre-clinical patient observation and selection at Hadassah
University Medical Center for a total of 24 patients throughout several months.
Principal Investigator Dr. Dimitrios Karussis with assistance from Dr. Marc Gotkine is
directing the Phase I/II clinical trial underway at Hadassah Medical Center.
Dr. Adrian Harel, CEO and COO of BrainStorm, received his PhD in Neurobiology
from Weizmann Institute of Science and his postdoctorate from Washington University.
He has long been involved with major pharmaceutical and biotechnology companies as
“It is rare to find an opportunity
such as BrainStorm, which has
an extremely promising clinical
program that is supported
by strong preclinical data,
a seasoned and committed
scientific and development
team, and involvement from
leading industry consultants.
The clinical application of the
company’s NurOwn stem cell
therapy offers the potential
to transform the treatment of
neurological disorders with a
new class of effective and well
tolerated agents.”
JERUSALEM
Professor Daniel Offen studied molecular biology, specializing in
RNA processing, at the Weizmann Institute of Science, in Rehovot,
Israel. He furthered his education at the Albert Einstein College of
and his group have conducted pioneering work in the role of stem
cells in health and disease. Offen’s research has led to the publication
of more than a hundred articles. In addition, several therapeutic
technologies developed in his laboratory are presently undergoing
clinical trials.
Professor Eldad Melamed, MD, serves as Professor of Neurology at
Tel Aviv University’s Sackler School of Medicine. Professor Melamed
also serves as Head of Neurology of Rabin Medical Center, and is an
expert cell biologist. He was the Chief Medical Advisor of BrainStorm
Cell Therapeutics Inc. and served for seven years as the President
of the Israel Neurological Association. He is the Chairman of the
National Parkinson Foundation’s Center for Research Excellence in
Israel and is the Director of the Felsenstien Research Institute of the
Board of Michael J. Fox Foundation for Parkinson’s Research and
Eldad Melamed, MD
Former Head of Neurology
Rabin Medical Center
Tel Aviv University
Cell Therapeutics Inc. Prof. Melamed received his MD degree in
1968 from Hebrew University and Hadassah Medical School in
Jerusalem, completed his residency at Hadassah University Hospital
and spent three years at the Massachusetts Institute of Technology on
a postdoctoral fellowship in neurochemistry and neuropharmacology.
Dr. Adrian Harel, CEO,
BrainStorm
In July 2011, collaborations between BrainStorm with both Massachusetts General
Hospital and the University of Massachusetts Medical School were announced. Once
facilities and receives FDA approvals, the US trial will be conducted in parallel with
trials underway in Israel. The University of Massachusetts team will be led by
Professor Robert Brown, MD, and chair of the neurological department, a renowned
Merit Cudkowicz, MD, expert in clinical trial design and therapy development
for neurodegenerative disorders, experienced in leading many clinical trials in the
NurOwn Stem Cell Implantation Therapy Step-by-Step
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Jerusalem
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His experience and dedication make him the best person to oversee the BrainStorm
Mesenchymal Clinical Trial as the Principal Investigator in the Phase I/II clinical trial.
The Department of Neurology at Hadassah Medical Center has, within its
framework, a laboratory for Experimental Neurology which is very active in diverse
Dimitrios Karussis, MD, PhD
Principal Investigator
Mesenchymal Clinical Trial
Neurologist-Neuroimunologist and
Head of the Multiple Sclerosis Center
Department of Neurology
Hadassah University Hospital, Ein Kerem
technicians which enable both the students and the doctors to engage in research
in addition to their clinical obligations. More than 6000 patients utilize the services
of this prestigious department each year. The departmental doctors are leaders in
CELL CURE NEUROSCIENCES LTD.
stage and is currently at the stage of testing research grade cells in a rat model of Parkinson’s disease. This will be followed by
testing in a monkey model leading to clinical studies. Work on the scaling up of cell production is also being initiated.
Cell Cure’s mission is to become a leading source of dopaminergic neuron therapeutics shown to be effective for Parkinson’s
disease. Their main product is a human embryonic stem cell derived cell therapy preparation that when injected into the brain
of Parkinson’’s disease patient will generate dopaminergic neurons. Considerable intellectual property has been developed by
JERUSALEM
Upon graduation from Hadassah University Hospital and the Weizmann Institute
of Science in 1995, Dr. Karussis began his impressive career at Hadassah
Hospital. He has been the Principal Investigator of dozens of international trials in
pharmaceuticals, immunological studies and stem cell trials in Multiple Sclerosis and
interest are the ability of human embryonic stem cells to differentiate into nerve cells, methods to derive and culture neural
neurons. ES Cell International is the owner of the patent applications.
medical advances through enrichment seminars. Ongoing contact between doctors,
researchers, interns and staff contributes greatly to the superb care patients are given.
A new, state-of-the-art neurosurgical microscope was recently installed in the
sophisticated optical capability and innovative software, further enables surgeons to
perform complex operations on the brain and spinal cord. The microscope also has
Benjamin Reubinoff, MD, PhD
Professor of Obstetrics and Gynecology
Hadassah University Hospital
Director of Human ES Cell Research Center
Goldyne Savad Institute of Gene Therapy
Chief Scientific Officer and Head of Research
Cell Cure NeuroSciences Ltd.
Professor Reubinoff serves as the Director of the Hadassah hESC Research
Center, established in 2003 within the Goldyne Savad Institute of Gene
Therapy of Hadassah. He was the second scientist in the world to derive
the development of human embryonic stem cells for regenerative medicine.
His major clinical interests include male and female infertility, assisted
reproductive technologies and preimplantation genetic diagnosis.
The major objective of the Research Center is to develop technologies for
the utilization of hESC for transplantation and gene therapy. Far-reaching
goals also include promotion of stem cell research at Hadassah Hospital
and in Israel. The Center serves as a base for multidisciplinary collaborative
credentials include seven research grants and many peer-reviewed journal articles
on a wide variety of subjects. Most recently, Dr. Gotkine has focused his energy and
training and insight into their care and is proactive in his willingness to have his
patients participate in clinical trials.
Marc Gotkine, MD
clinical trials and that it is essential for there to be opportunities for them to
participate in relevant research. He understands and believes in the need for
research and supports patients who seek alternative treatments, but he does
not endorse any treatment that does not have an overall protocol and/or lacks
have to pay to participate. He believes that the current protocol being researched
at Hadassah-BrainStorm has excellent potential in that it relies on growth factors
which should help stem cells to migrate successfully.
Head of ALS/Motor Neuron Disease Clinic
Department of Neurology
Hebrew University Hadassah Medical
Center, Ein Kerem
Tamir Ben-Hur, MD, PhD
participate in the trial should not lose hope. Dr. Gotkine will provide much of the
preliminary observational information and follow-up examination of his patients to
In our visit together, it was clear that Dr. Gotkine cares deeply about his patients,
Head of the Department of Neurology
Hadassah University Hospital
Ein Kerem, Jerusalem
Consultant
Cell Cure NeuroSciences Ltd.
He is currently pursuing basic research in stem cells for Multiple Sclerosis.
While his work has yet to be translated to human patients, it does show
promise and he believes it will be possible to create neural stem cells from
embryonic stem cells. But, it will take time to move from animal testing to
human testing for MS. At the same time, his work supports the BrainStorm
trial currently underway. Although the information they have is not the
same as the information obtained from the use of mesenchymal cells, one
essential. By using mesenchymal cells, Professor Ben-Hur believes better
information will be reached sooner. Professor Ben-Hur’s efforts in MS may
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Jerusalem
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MONARSEN
In 1918, the early Zionist vision of establishing a “University of the Jewish People” in the
Myasthenia Gravis causes muscle weakness, and while the symptoms may improve temporarily with rest, the disease tends
including the University’s founding father, Dr. Chaim Weizmann, distinguished academics
affects voluntary muscles. Certain muscle groups are more commonly affected than others. Symptoms include one or both
attendance were Chief Rabbi Abraham Isaac HaCohen Kook, the poet Haim Nahman
Bialik and many others.
antibodies that block or destroy many of the muscle receptor sites for a neurotransmitter called acetylcholine. With fewer
receptor sites available, muscles receive fewer nerve signals, resulting in weakness.
The First Board of Governors of the University, chaired by Dr. Weizmannn, included such
luminaries as Albert Einstein, Sigmund Freud, Martin Buber, Haim Nahman Bialik, Asher
Harry Sacher and Felix M. Warburg.
JERUSALEM
HEBREW UNIVERSITY
not been any clinical trials. Both Phase I and Phase II trials conducted for patients with Myasthenia Gravis resulted in
Hebrew University,
Inauguration Ceremony, 1925
symtoms and improvement.
graduates. By 1947, the University had become a large, well-established research and teaching institution
encompassing humanities, science, medicine, education and agriculture, the Jewish National and University
Amarin, a pharmaceutical company in Ireland, purchased the patent held by Hebrew University, but the company
were some 200 faculty members.
chosen to replace them. At this time, Monarsen does have orphan drug status granted by the FDA in 2003 but does not
have FDA approval for Myasthenia Gravis, no trials are currently listed on ClinicalTrials.gov and the drug is not available
The War of Independence in 1948 left the University campus cut off from
Israeli west Jerusalem, and alternative facilities were found throughout the
city. In 1953, construction began on a new main campus at Givat Ram in the
heart of Jerusalem. A few years later work began on a health sciences campus
in Ein Kerem in southwest Jerusalem, in partnership with the Hadassah
Medical Organization. By the beginning of 1967, the number of faculties and
schools had been greatly expanded, and enrollment exceeded 12,500.
this compound.
map, express and characterize the normal and mutated cholinesterase
genes and to identify their multiple alternative splicing products
began on restoring and expanding the Mount Scopus campus. In 1981, the
historical Mount Scopus campus again became the main home of the University. Since then, the University
has continued to expand. In conjunction with Hadassah Medical Center, Hebrew University maintains an
impressive health sciences center on three campuses in Jerusalem and a fourth in Rehovot, near Tel Aviv.
Dean of the Faculty of Natural Sciences of the Hebrew University
of Jerusalem, has published more than 250 peer-reviewed journal
articles, written seven books and has won many distinguished awards.
Today there are more than 23,000 students and four campuses, including Mount Scopus, The Edmond
J. Safra, Ein Kerem, Rehovot and more than 15 different schools. The University houses the prestigious
EDMOND AND LILY SAFRA CENTER FOR BRAIN SCIENCE
Sciences, which aspires to revolutionize current neuroscience research. The Center brings together a
powerful interdisciplinary team of top scientists to explore the relationships between gene function, brain
neuronal circuits, and behavior.
This collaboration will have profound implications for our ability to understand and treat neurological and
psychiatric disorders. The Center will contribute to worldwide progress in brain science and establish the
Hebrew University as one of the world’s leading neuroscience centers.
approaches for exploring the mechanisms underlying stress-associated
diseases and developed innovative strategies for alleviating the
Hermona Soreq, PhD
Professor of Molecular Biology
Department of Biological Chemistry
Institute of Life Sciences
Interdisciplinary Center for Neural
Computation
The Hebrew University
Jerusalem Israel
stresses. Human stress reactions allow for immediate survival yet can
entail long-term damage spanning neuromuscular, neurodegenerative,
Monarsen, an orphan drug for treatment of the autoimmune disease
Myasthenia Gravis. Because similarities exist between Myasthenia
and modern new facilities, the Center, together with established neuroscientists at Hebrew University, will
have a leading role in generating a powerful intellectual home for cutting-edge brain research.
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Jerusalem
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TEL AVIV UNIVERSITY
One hundred years ago, Tel Aviv, which means “Hill of Spring”,
was barren land. Then in 1909, a group of Jewish residents of Jaffa,
including David ben Guion, founded the new city originally as a suburb
of Jaffa. In 1916, Jews in Tel Aviv were evacuated by the Turks but one
year later, following the end of World War I, the British took control
and Jews were able to return. Within a decade the suburb became a
city in its own right, a center of culture, commerce and light industry.
Today, Tel Aviv with its suburbs has over 3.3 million residents, is the
of the country. The manufacturing of textiles, clothing, chemicals, metal
this thriving metropolis on the Mediterranean Sea.
Mendelssohn, the Academic Institute of Natural Sciences was established, transforming the core of
HAIFA
Economics, the Institute of Natural Sciences, and the Institute of Jewish Studies together formed the
University of Tel Aviv.
university, serving more than 30,000 students with 17 research institutions and a network of teams to
realize goals: basic understanding of human pathophysiology and cotinuing improvement of disease
prevention, diagnosis and treatment. It is a major center of teaching and research, comprising nine
faculties, 106 departments, and 90 research institutes. Souraky Medical Center, Chiam Sheba Medical
Center and the Joseph Sagol Neurosciences Research Center are three of the outstanding centers
Petach Tikva
TEL AVIV
Rehovot
Sourasky Medical Center is recognized globally for patient care and contributions to clinical and
West
Bank
TEL AVIV
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Tel Aviv University came into being through the dedicated efforts of visionaries who saw the need for
an additonal university in Israel’s rapidly growing central region. In the 1930’s, Meir Dizengoff, the
mayor of Tel Aviv, promoted two post-secondary educational facilities: The Biological-Pedagogical
Maternity Hospital and the Dana Children’s Hospital and serves as an instructional and research center
Chiam Sheba Medical Center is a
comprehensive medical center, renowned for its
compassionate care and leading edge medicine.
JERUSALEM
Sheba collaborates internationally with biotech
and pharmaceutical corporations to deverlop new
drugs, treatments and technologies. Sheba combines
six major facilities: a medical research complex,
medical education academic campus, acute care
hospital, children’s hospital, women’s hospital and
rehabilitation hospital.
Masada
Joseph Sagol Neuroscience Research Center
has made signicant steps forward in clinically
neurosurgery and psychiatry has led to novel and important insights into the genetic and environmental
risks, etiology, diagnosis and treatment of presently incurable brain disorders such as Alzheimer’s
disease, Parkinson’s disease, developmental disorders, schizophrenia, stroke and traumatic brain injury.
Collaboration with academic institutions in Israel and abroad are an integral part of the center’s
mission to become the leading neuroscience center in Israel.
The Negev
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Tel Aviv
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Under the leadership of Professor Illana Gozes, the Adams Super Center for Brain Studies at Tel Aviv
University brings together leading scientists, creating a multidisciplinary approach to brain research. Studies
and teaching are aimed at deciphering the secrets of the brain and solving devastating diseases. The Felsenstein
THE WEIL LABORATORY
Dr. Miguel Weil and his research team are currently working on
in Israel, directed by Professor Avi Weizmann
Vivian Drory, MD
yet unknown mechanism of the disease. Understanding the role of
emphasis in electromyography. Her extensive list of publications include other areas of neurology such as
Multiple Sclerosis, Parkinson’s disease, multiple system atrophy and post-polio syndrome. Her research has
Stephen Byer and Dr. Miguel Weil
Miguel Weil, PhD
Laboratory for Neurodegenerative Diseases
and Personalized Medicine
Department of Cell Research and Immunology
The George S. Wise Faculty of Life Sciences
Tel Aviv University
Biomarker expression in blood samples. This approach may lead to a
Current efforts include the development of a diagnostic biomarker
protein assay comprising comparative analysis of the protein expression
TEL AVIV
Professor Gideon Rechavi, Sheba Medical Center, Sackler School of Medicine, Tel Aviv University. While
Dr. Rechavi’s area of greatest specialization is in Pediatric Hemato-Oncology, he has done outstanding core
research on the impact of adenosine-to-inosine RNA editing toward the development of motor neuron disease.
human mesenchymal stem cells.
and conditions for which the pathogenesis and etiology are unknown.
Once additional funding is available, The Cell Screening Facility for
Personalized Medicine of Tel Aviv University will become a reality.
“Mesenchymal Stem Cells in Regenerative Medicine” for the launch
of the Taubman Institute-Israel Initiative, established to promote
collaborations between the University of Michigan and Israeli research
George S. Wise Life Sciences Building
GEORGE S. WISE LIFE SCIENCES
those who wish to volunteer blood and/or mesenchymal cells for
this research.
Tel Aviv University
The Department of Cell Research and Immunology is comprised of 13 active research groups. The
research performed in the Department encompasses: Immunology, Cancer, Eukaryotic Gene expression,
number of practical and clinical applications, as well as patents, and is funded by grants from both national
and international sources.
multiple factors underlie the disease mechanism. This fact enhances the need to use a multi-disciplinary
translational levels, an abnormal expression of these two genes suggests a problem in the regulation of
Weil Laboratory, Dr. Miguel Weil and Associate
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Tel Aviv
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WEIZMANN INSTITUTE
Rehovot, Israel
CONTROVERSIAL CLINICS
While attempts are made to do thorough investigations of clinics, programs and research institutions,
With hundreds of scientists, laboratory technicians and research students working on its beautifully
landscaped campus in Rehovot near Tel Aviv, groundbreaking medical and technological applications
have emerged from basic research conducted by Weizmann Institute scientists that include; amniocentesis,
a prenatal diagnostic test for the fetus; sophisticated laser systems for high-precision diamond cutting; A
method for growing hybrid seeds that prevent the transmission of disease from one generation to the next
the modern polymer industry.
Outstanding Researchers
Professor Ada Yonath was awarded a Nobel Prize in Chemistry for her research that solved the structure
of the ribosome, the cell’s protein factory and revealing it’s means of action. Her research should speed the
Dr. Eran Hornstein is Professor of Molecular Genetics. His work in the study of microRNA molecules
Professor Michel Schwartz of the Department of Neurobiology is a specialist in immunology. Her
spinal cord injury. Dr. Schwartz has brought new understanding to the impact of the immune system
presentation at the Israeli Stem Cell Society.
provide accurate information so that patients can determine the best option for themselves.
INTERNATIONAL CENTER FOR CELL THERAPY AND CANCER IMMUNOLOGY
BRAIN STEM BIOTECH
Shimon Slavin, MD
to treat cancer using donor lymphocyte infusions, post allogeneic stem cell transplantation and multipotent
stem cells for regenerative medicine in the repair of damaged tissues and organs. In 2005, Dr. Slavin began
separate occasions, once in Chicago in 2007 and in August 2010 and June 2011 in Israel. In all of those
This is unfortunate because he has otherwise good credentials and has done some excellent work on behalf
of cancer patients.
TEL AVIV
The Weizmann Institute of Science is one of the world’s leading multidisciplinary research institutions,
offering graduate and post-graduate studies in the sciences to more than 2500 scientists and postdoctoral
fellows, PhD and M.Sc students. Founded in 1934 by Chaim Weizmann and Benjamin Bloch in 1934, it
was renamed the Weizmann Istitute of Science in 1949. Degrees are offered in mathematics, computer
science, physics, chemistry, biological chenistry, biology and several interdisciplinary programs.
More recently, Chaya Brokie, PhD, of Henry Ford Hospital, Detroit Michigan , has joined Dr. Slavin for
the purpose of doing animal research to coax mesenchymal cells into becoming neural stem cells that can
be neurons, astrocytes and oligodendrocytes. Dr. Slavin believes this approach will rescue dying neurons
and/or prevent neuronal death. Adult stem cells taken from bone marrow and fat from adipose tissue can
differentiate into neurons. These mesenchymal stromal cells are then injected into the lower lumbar region
intrathecally and infused intravenously. Dr. Slavin states that one million mesenchymal stromal cells are
injected intrathecally in the lumbar region, and 2-3 million cells are infused intravenously. While it may
Both Dr. Slavin and Dr. Brody have each published numerous articles in peer-reviewed journals on medical
research and innovation. However, the New England Journal of Medicine and Science publication that
gene therapy, combined with reduced-intensity conditioning, is a safe and effective treatment for SCID
When Dr. Slavin was asked if he has IRB oversight, his response is an IRB will just “hold him back.” He
company, Brain Stem Biotech, a registered company holding the patents.” The extraction of bone marrow
is done in Israel, but Israeli law forbids him to do the cell injections so patients must travel to Switzerland,
Athens, Istanbul or Munich. He does little, if any, follow-up with patients once they leave. The charge for
symptom relief or stabilization.
then submit a proposal for approval to proceed with the Israeli Ministry of Health. Unless and until Dr.
Slavin’s pursuits demonstrate oppropriate levels of oversight, government regulation, patient followup and
Mouse Embryonic Stem Cell Growing on Silicon Rods, Microscopic Image Magnified
16
Tel Aviv
www.alsworldwide.org
17
HAIFA (cont’d)
Haifa received real impetus for growth when it was linked by rail with Damascus and Egypt in the period
(!)&!
maritime center.
Haifa became a center for Jewish immigration during Nazi oppression, when thousands entered through the
also home to Matam, the giant high-tech center, Intel, Elbit Defense Contractors and Elscint Medical Imaging.
Haifa is the largest city in northern Israel and the third-largest city
in the country with a population of nearly one million, including the
contiguous cities of Kiryat Bialik, Tirat Carmel, Daliyat al-Karmel and
Nesher. This major seaport, located on Israel’s Mediterranean coastline
in the Bay of Haifa, is about 60 miles north of Tel Aviv, and home to
two well respected academic institutions, the University of Haifa and
The Technion, and to the Bahai World Center, a UNESCO World
IsrALS (Israel ALS)
Sea of
Galilee
HAIFA
gardens on the slopes of Mt. Carmel.
The settlement history of Haifa spans more than 3000 years. The
earliest known settlement here was Tell Abu Hawam, a small port
established in the 14th century BCE. Through the centuries, the city has
created this foundation to raise funds for research. Among the initial supporters were Professor Peretz
throughout Israel to raise awareness.
student at Harvard University and enlisted his friends to create funding, awareness and research teams that
Petach Tikva
TEL AVIV
Rehovot
HAIFA
Romans, Byzantines, Arabs, Crusaders and Ottomans.
patients and their families; raises and distributes grants
to encourage dedicated and vigorous research; targets
advocacy to heighten awareness; ensures full social
West
Bank
Dalia Ligati, Stephen Byer, Efrat Carmi
JERUSALEM
IsrALS (Israel ALS)
Dead Sea
Masada
Haifa Israel
David Cohen, Founder
Dov Lautman, President
Nir Tsoran, Former CEO
Efrat Carmi, CEO
Dalia Ligati, Manager
governmental and non-governmental support.
energetically heads the organization, coordinating efforts
with a small, vigorous staff; driving from one end of
families cope with the many challenges they face. As
the primary organization in Israel dedicated to raising
efforts to help the nearly 700 Israeli patients gain the
physical and psychological assistance they need. Efrat
believes that hope is stronger than fear, that research is
is more necessary than ever. Under her dynamic aegis, it
has also become more valuable than ever.
18
Haifa
www.alsworldwide.org
19
THE TECHNION
Israel Institute of Technology
When it was founded in 1912, the emphasis was on natural sciences, engineering and architecture. The
Northwestern University’s Feinberg School of Medicine and presented in Nature Magazine in August 2011.
departments in the world.
This research at the Technion has led to the development of the second generation of monoamine
neuroprotective-disease modifying drug for Parkinson’s Disease, in collaboration with Teva
Pharmaceutical Company and the multifunctional neuroprotective anti-Alzheimer drug
Professor Marta Weinstock
of Hebrew University. For the past ten years he has been advocating development of multimodal
neuroprotective- neurorestorative drugs with various neuron targets as treatment for neurodegenerative
Weizmann Institute, novel multifunctional iron chelators with monoamine oxidsase and cholinesterase
The Technion was conceived in the early 1900s by the German-Jewish fund Ezrah, as a school of engineering
and sciences. It was to be the only institution of higher learning in then-Ottoman Palestine. The Technion
students, including one woman, majoring in civil engineering and architecture. As Jews from across Europe
Until the establishment of a school of engineering at Ben Gurion University in the early 1970s, the Technion
was the only institution in the country offering engineering degrees.
Professor Mousssa Yudim, Rappaport Faculty of
Medicine, The Technion, Haifa, is a leader in the study
of neuroprotective, neurogenic and cell arrest activities
M30, mop up the iron before it can trigger a “brain rust”
chemical reaction where highly active oxygen particles
destroy brain cells.
Parkinson’s Disease and Alzheimer’s Disease, drug development for these disorders and for establishing the
importance of monoamine oxidase and brain iron metabolism for brain function that can lead to cognitive
impairments in ADHD and neurodegenerative diseases. His research at Oxford University led to the discovery
was responsible for changing the prospects of treating Parkinson’s Disease and other neurodegenerative
20
Haifa
UNIVERSITY OF HAIFA
HAIFA
Professor Mati Fridkin of the Weizmann Institute,
he has developed novel, multifunctional iron chelators
with monoamine. These drugs remove excess iron from
the brains of patients with neurodegenerative diseases.
The presence of too much iron in the brain is a hallmark
The University of Haifa was founded in 1963 by Mayor Abba
Hushi under the auspices of the Hebrew University of Jerusalem.
Today, with 18,000 undergraduate and graduate students, the
University is broadly divided into Humanities, Social Sciences,
opportunities to all sectors of society and encouraging mutual
understanding and cooperation between the Jewish and Arab
population. The Hecht Museum of archeology and art, research
centers and institutes, the Center for the Study of National
Security and the Tourism Research Center are just some of the
many centers housed on the campus.
www.alsworldwide.org
21
Initiatives
Stephen, launched a search throughout the world for a cure
to save his life. Self educated, motivated and acutely aware
Patient Assistance Programs
families in Washington DC, along with a lobbying effort
in the US Senate, for patients to gain FDA approval for
knowledge, compassion and integrity have earned him a
One effort that was initiated in those early years continues
to this day: Our personal availability via in-home visits,
families and to provide new research information, potential
support. While not a “crisis line” in the usual sense of the
phrase, we are available 24 hours a day, 7 days a week.
of patients. We also convinced Tercica Pharmaceuticals to
a Patient Assistance Program. Together, both programs have
distributed to patients free of charge. Both growth hormones
continue to spark interest in research efforts although nothing
Website
problems, reaching out to family members, being available
for extended family conferences are all important parts
of work performed on a continuing basis. In-home visits
help patients feel less isolated and more optimistic. The
Diaphragm Pacer System as a replacement for the more
invasive vent, while seeking FDA approval, showed great
promise but was still in its early stages when we urged it upon
the very latest information in layperson’s terms on current
research, remedies to alleviate symptoms, stem cell
opportunities that hold substantial promise, clinics and
facilities to avoid and pharmaceutical products that are in
clinical trials.
Informal, but well-organized, open label trials were initiated:
Newsletters sent by email provide current developments
in research trials, new approved medications and other
therapies that offer symptom relief. Support to over
Newsletter
Interviews
In November 2010, Stephen and Barbara attended the
Minutes documentary, “21st Century Snake Oil Salesmen”
on fraudulent stem cell clinics, the result of our research
conducted on more than 200 stem cell facilities throughout
the world.
Recent broadcasts, interviews and articles include those
in German Public Television, Good Housekeeping, The
Association, World Stem Cell Report, WhyFiles, British
Medical Journal and others.
Outreach
Outreach is a constant and current part of our agenda.
During the past six years, we have given speeches, radio
and television interviews and presented programs and
workshops at the World Stem Cell Summits, Motor Neurone
Foundation, United Kingdom National Stem Cell Network
and elsewhere. Our future communications effort includes
greater numbers of press releases, speaking engagements,
television and radio interviews, and media advertising.
Indestructible
seminar for area neurologists while there. Press interviews
with newspapers, television and magazines were conducted
Publications
Maze of Stem Cell Transplantation,” literature that has
been distributed to over 2500 researchers, patients and
medical personnel at the 2010 World Stem Cell Summit,
also available on-line through our website. Although stem
cell treatment is still in the early stages of research, the
information contained in the publication helps patients
distinguish between relevant, legitimate clinics and facilities
from those that are fraudulent.
Symposia
the auspices of the International Consortium of Stem
out of the shadows and into a bright light.
Neurone Disease Association. This 2-day hard science
workshop focused on the global state of stem cell research
The hoped-for result of such efforts will be to increase
research activity worldwide and to encourage greater levels
prospects for success in the future. Results of this conference
have since been published.
Methylcobalamin
accomplished through telephone and email counseling,
Skype and in-home visits.
patients and their families.
to know and care about. Unfortunately, time was not on
Ben’s side.
Tecnologico de Monterrey
Grass Roots Advocacy Award
Ben became a pioneer for stem cell therapy by allowing a
Chinese surgeon to implant fetal cells into his brain and
de Monterrey Stem Cell Protocol to the international
National Grassroots Advocacy Award from Genetics
Policy Institute, an international organization focused on
the continuing advancement of stem cell protocols. Prior
awardees include Christopher and Dana Reeve Foundation,
Cure Michigan, Juvenile Diabetes Research Foundation and
the Canadian Stem Cell Foundation.
strength in the face of overwhelming despair as he sought
meaning for what remained of his life.
Culiacan Mexico, conducted numerous press interviews,
forefront of public awareness. Increased distribution of
among them. Each month, promising research was explored,
all in hopes of discovering, if not a cure, than a way to
participation in their Phase II clinical test studies. This trial
procedure shows promise as it hopefully moves into a
Phase III trial.
Culiacan Mexico Screening
been able to obtain and informally trial injectable
that achieved a relevant measure of success in both animal
effects include greater limb strength and elevated energy,
ALS WORLDWIDE
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years earlier.
22
ALS Worldwide
www.alsworldwide.org
23
-AJOR0ROJECTS
Israel’s Commitment to ALS
The Cluster Effect
community, while involved in ground breaking research,
cell research, we spent May and June 2011 in Israel. We
met with major researchers and institutions including
BrainStorm Cell Therapeutics in Petach Tikva, Hebrew
University, Hadassah Hospital in Jerusalem, Tel Aviv
University and many others. Our investigation included
on-site review of facilities and evaluation of published data.
We traveled the length and breadth of Israel in search of
answers. What we found were committed, energetic and
brilliant individuals, dedicated to their research and willing
to share information.
Some have ethnic, vocational and environmental aspects
to them. We continue to analyze nearly 50 of these clusters
began collaborative efforts with Dr. Paul Alan Cox, Director
of the Institute for EthnoMedicine, to more fully explore
these dynamics and to bring together those researchers most
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an extended period of time, we are hopeful of presenting
regular interim reports, beginning with an international
symposium now being planned.
Compassionate Care IND Trials
ALS Clinic and Facility Overview
has been initiated with the exploration and evaluation
of Massachusetts General, Emory University and Duke
into mid-2012. The publication of this study, planned for
release in Fall 2012, will be based upon the in-depth review
encourage broader clinical trial participation, so essential in
the search for a cure.
pharmaceuticals, under the auspices of the FDA and
pharmaceutical companies, through its Investigational New
Drug Trial program. Those who are absolutely ineligible
for relevant Clinical Trials are individually considered
for IND Compassionate Use access to trial drugs. This
is very limited, due to its high cost of organization and
maintenance, but an extremely relevant part of our effort
when it can be implemented on a case-by-case basis.
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If we are to succeed as an important conduit between patients, researchers, medical professionals and clinical trials, we
assignments that include research, literature and intensive accounting needs. We will remain a small, dedicated organization,
committed to the personal attention to detail that our patient population and readership have come to expect.
In our son Ben’s words, written in February 2008, just months before his death,
“...there is more to be done...to stand on my own, walk again, speak clearly, breathe deeply and revisit the life
Stephen and Barbara Byer
October 2011
Ben Byer with son John, Receiving Cinequest Best
Documentary Award for his film, “NDESTRUCTIBLE” 2007
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Become part of our growing organization today:
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24
ALS Worldwide
INTERNATIONALLYTHROUGHSCIENTIFICRESEARCHINTERPRETATIONINDIVIDUALPATIENTADVOCACYANDCOMMUNITYACTIVISM
Dedicated to the honor and memory of Benjamin Saul Byer
and all ALS patients and their families who have become part of our lives.
Barbara and Stephen Byer
Co-Executive Directors
125 North Hamilton Street
Madison, WI 53703
[email protected]
[email protected]
www.alsworldwide.org
Michael E. Schafer, M.D., Medical Director, Chicago, IL
Legal Counsel, Director,
Madison, WI
David Sitt, Executive President Publicidad Virtual,
Mexico City, New York, Madrid
Nicholas D. Mazarakis, PhD,
Jorge Moreno-Cuevas, PhD, M.D.,
Monterrey, Mexico
This project has been supported through contributions from
Sharna and Irvin Frank Foundation
Sitt Family Foundation
Lillian Jean Kaplan Foundation
ALS WORLDWIDE is a nonprofit organization
that provides support to ALS families
internationally through scientific research
interpretation, individual patient advocacy
and community activism.