In June 2010, the Meir Medical Center in Kfar Saba, central Israel, inaugurated a specialized clinic that offers a number of services to patients suffering from Machado-Joseph Disease (MJD, or Spinocerebellar Ataxia Type 3).
The clinic is the joint initiative of the Meir Medical Center in Kfar Saba and the Machado-Joseph Association. It is directed by Prof. Carlos Gordon of the Meir Medical Center Neurology Department headed by Dr. Colin Klein.
The clinic offers diagnostic, evaluation and neurological observation services, and its multidisciplinary team administers various other services as and when needed. These include, among others, social assistance, physiotherapy and occupational therapy, as well as treatments for speech and swallowing difficulties, breathing impairment, sleep disorders and pain.
The clinic is also a base for ongoing MJD-related services and activities, including information and data coordination, studies, research and seminars. It also provides training, advice, and support meetings for patients and families.
To make an appointment, please call 09-7472780 to speak to Malka or Shira at the appointments office, and specify that you would like to visit the Machado-Joseph Clinic.
A “Tofes 17” payment form from your Kupat Holim must be presented at the clinic.
THE ASSOCIATION
The Israeli Machado Joseph Association (MJDIL) was founded in 2009 by families of MJD patients and carriers. It aims to raise public awareness of the disease, provide support to patients, carriers and families, and advance clinical research with a view to developing a cure for MJD.
MJDIL is a non-profit organization operated entirely by volunteers.
Most patients diagnosed with MJD in Israel thus far are of Yemenite descent. MJD is a rare disease, which until recent years has not received due attention from the medical establishment. As a result, MJD sufferers were often misdiagnosed with Parkinson’s disease, MS, Huntington’s disease and other neurological disorders.
The number of MJD patients in Israel is currently unknown, and the Association is working to identify and locate such patients and encourage them to join the growing community, thus increasing its influence and ability to promote MJD research and procure better treatment and support for patients.
Over the past few years, the Israeli Machado Joseph Association has
- inspired scientific research projects in several Israeli institutions;
- established an MJD clinic and center under the auspices of the Meir Medical Center;
- held regular support meetings for patients and their families.
MJDIL collaborates and shares information with leading local and international researchers and specialists, with a number of Israeli associations for neurological disorders and for patients’ rights, and with MJD organizations around the world. It organizes meetings and conferences with the participation of Israel’s top clinical and scientific experts in the field, keeping abreast of local and international advances in research and dispensing relevant information through meetings and conventions as well through this website.
The more members we have, the more power we have to help our dear ones now, and our children in the future.
Announcements and Updates:
The MJDIL directorship, volunteers and members give their heartfelt thanks to the Ben Zur family: Ruth and Immanuel Ben Zur, Boaz Ben Zur, Eran Ben Zur and Irit Ben Zur-. We are deeply grateful for their generous donation, which has made it possible to carry out a study on deep transcranial magnetic stimulation (DTMS) as part of the collaboration between the Meir Center MJD clinic, Brainsway Inc., and our association.
During the preparatory phase of the trial, the equipment developed by Brainsway was installed at the MJD clinic at the Meir Medical Center. An initial patient has successfully completed the series of treatments specified in the trial protocol, and the Ministry of Health has approved the continuation of the study with a group of patients. For further updates, see the Association’s Facebook page (link below).
The Association is also happy to report that the Ministry of Health has approved an additional study, investigating the effects of Cabaletta medication on MJD patients. This is a collaboration between the BioBlast Pharma Company, the Meir Center MJD clinic, and MJDIL. Cabaletta is a preparation based on trehalose, a disaccharide used as a protein stabilizer in the medicine industry. Preliminary studies have indicated that it may be able to break down the mutant ATXN3 structures that accumulate in the cerebellum cells of an MJD patient. To participate in the study or for further details, please contact the clinic during its opening hours at tel. 09-7472780.
MJDIL thanks the partners in this study and wishes its participants success.
The Association’s directorship congratulates Prof. Carlos Gordon and his team on the registration of the MJD clinic at the Meir medical center as a Specialized Medical Service under the auspices of the Medical Administration at the Ministry of Health – yet another acknowledgement of the necessity of research into MJD and more treatment options. This new status obliges all national medical funds (kupot holim) to refer patients to the clinic on request for tests or consultation (i.e. to provide a payment voucher, tofes 17). It is now a national center for treatment of MJD and a home for the growing body of knowledge on the disease and its treatment.
We are pleased to report that we have added Machado Joseph Disease to Hebrew Wikipedia. The entry includes extensive information about the disease and links to the MJDIL website and to other websites and articles related to MJD.
We are also pleased to report that the Hebrew Facebook page for the Israel Machado Joseph Association is now active and continuously updated with news and photographs. Please visit and give us your Likes J
Research
Groundbreaking research in the area of genetics and stem cells, conducted in Israel and internationally in recent years, is increasing the likelihood of discovering a cure for MJD. Other studies are exploring methods of slowing down the progress of the disease and relieving its symptoms.
MJDIL maintains ongoing contact with researchers, assists as much as possible with these studies, and reports on their progress at its annual conventions.
Currently a trial is underway to test the effectiveness of deep transcranial magnetic stimulation (DTMS) in the treatment of Machado Joseph Disease. DTMS is an innovative technology developed by Israeli company Brainsway, which enables stimulation and activation of damaged cerebral areas by means of a concentrated magnetic field.
This study, a joint initiative of MJDIL, the MJD clinic at the Meir Medical Center and Brainsway, is made possible thanks to the generous donation of the Ben Zur family.
Further information regarding this study is available from the MJD clinic at the Meir Medical Center, and from the MJDIL office.
Scientific Advisory Committee
The Association is guided by the recommendations of a committee of clinical and scientific experts, including:
Prof. Vardiella Meiner
Prof. Carlos Gordon
Dr. Samuel Hess
About MJDIL
In the early 1990s one of our family members began to experience symptoms of physical instability. After several misdiagnoses and misguided medical treatments stemming from unfamiliarity with the disease, he was eventually diagnosed with Machado Joseph Disease. In the early 2000s another family member developed similar symptoms. This time, because of the precedent, the diagnosis was prompt and accurate.
Comprehensive testing found several cases and several carriers of the disease in our family. At that stage we made initial contact with other families diagnosed with MJD.
In July 2008 an initiative was launched to establish a non-profit organization in Israel, with the aim of promoting research and developing a cure for MJD. March 2009 saw the founding of the Israel Machado Joseph Association (MJDIL), a countrywide alliance of patients, carriers and their families. In April 2009, the Association sent its representatives and several researchers to an international MJD conference in the Azores.
MJDIL holds annual conventions to present its activities and achievements. Guests include scientists, lecturers and medical personnel with whom it collaborates on developing a cure for MJD.
MJDIL’s raison d’être is to support Israeli research and worldwide cooperation with the goal of finding a treatment or medication to cure or slow down the disease; and to create a network of mutual help and support for patients, carriers and families.
MJDIL is a non-profit organization operated entirely by volunteers.
Our Goals:
In order to achieve its goal of finding a cure for Machado Joseph Disease, the Israel Machado Joseph Association works on several levels:
Research:
- Raising funds for MJD research and developing a cure.
- Assisting in ongoing MJD research.
- Liaising and collaborating with relevant scientists and organizations in Israel and internationally.
Support:
- Creating a network of mutual help and support for patients and their families.
- Creating a patients’ database for Israel.
- Securing full recognition of MJD by the medical establishment.
- Raising awareness of the disease among doctors, researchers and the general public.
MJDIL Trustees
The Israel Machado Joseph Association is fortunate to have the keen help and support of these leading Israeli cultural and political figures:
- Bezalel Aloni
- MK Eitan Cabel
- Margalit Tzan’ani (Margol)
- Avigdor Kahalani
MJDIL Annual Convention, 2012
The convention was held on 7 December 2012 in the community hall of Moshav Sdei Hemed.
Program:
10:30 Arrival and registration
10:45 Presentation of MJDIL activities:
- Summary of 2012 activity, Eyal Israeli, CEO.
- Submission for approval of financial reports and balance sheets.
- Submission for approval of post holders’ list, and MJDIL accountant’s authorization for the following year.
11:45 Refreshments
12:00 Guest Speakers:
- MJD Clinic activities, Carlos Gordon, Meir Medical Center.
- Transcranial magnetic stimulation (TMS), Mr. Amnon Gat, Brainsway Inc.
12:45 Questions and answers
13:00 Closing remarks
MJDIL Annual Convention, 2011
The convention was held on 16 December 2011 in the community hall of Moshav Sdei Hemed.
Program:
10:00 Arrival and registration
10:30 Presentation of MJDIL activities:
- Summary of 2011 activity, Eyal Israeli, CEO.
- Presentation of genealogical study, Eyal Israeli, CEO.
- Collaborations with other associations and organizations, Tomer Hillel, MJDIL.
- Advancement of patients’ rights, Avi Grinstein, MJDIL.
- Program for future support meetings, Eyal Israeli, CEO.
- Submission for approval of financial reports and balance sheets.
Submission for approval of changes to post holders’ list, and MJDIL accountant’s authorization for the following year
11:30 Break
11:45 Guest Speakers:
- MJD Clinic activities, Carlos Gordon, Meir Medical Center.
- Overview of research progress, Prof. Eran Meshorer, Hebrew University.
- Questions and answers
13:00 Closing remarks
MJDIL Annual Convention and Opening of MJD Clinic, 2010
Program:
- Congratulations on the opening of the Clinic, Dr. Doron Netzer, Deputy CEO at Meir Medical Center.
- The Machado Joseph Disease Clinic, Carlos Gordon, Meir Medical Center.
- Stem cells in MJD research, Dr. Eran Meshorer, Hebrew University.
- Words from the heart, Margalit Tzan’ani.
- Presentation of MJDIL activities, Eyal Israeli, CEO.
- Directions in research and collaborations, Tomer Hillel, MJDIL.
- Coping with chronic disease, Rina Froner, social worker, Meir Medical Center.
- Question and answer session with panel members Carlos Gordon, Prof. Vardiella Meiner, Prof. Nathan Gadot, Dr. Eran Meshorer, Rina Froner, and MJDIL representatives.
Images
Founding Convention, 2009
The first convention of the Israel Machado Joseph Association as a registered non-profit organization (amuta) was held on 21 August 2009 at Moshav Sdei Hemed.
The program was as follows:
- Welcome address
Slide presentation – the Israel Machado Joseph Association
- Vardiella Meiner, Director, Center for Clinical Genetics, Hadassah Ein Karem Hospital, Jerusalem, Dilemmas in genetic testing and methods for prevention of defective gene transmission.
- Carlos Gordon, Neurology department, Meir Medical Center, Clinical research of MJD: the importance of periodic examinations, establishing a regular group of patients for ongoing observation, testing of new medication, and participation in worldwide research.
- Revital Hillel, Strengthening and support of nerve cells; lifestyles – sports, nutrition, supplements and sleep. Slide presentation – lifestyles
- MJDIL activities – a summary.
Concluding slide presentation – August 2009 convention
- Question and answer session with panel members.
We thank all who took part in this convention.