The Juvenile Diabetes Research Foundation of Israel was founded in 1981 by parents and children with diabetes, as a branch of the International Juvenile Diabetes Research Foundation (JDRF), with its center in the United States.
JDRF Israel set out in proclamation of a central message: the commitment to finding a cure for diabetes and its complications through supporting research. The thousands of members, including many parents and volunteers, are dedicated to realizing the promise they made to their children that within their lifetime a cure will be discovered.
JDRF supports the funding of international research for finding a cure for diabetes, more than any other health organization in the world, and is also involved in the welfare of diabetics and their families, and in raising public awareness to the disease and its repercussions.
JDRF is able to realize its goals through the many contributions: at special events, from charitable organizations, foundations, contributions from businesses, individual contributions, and the volunteer work of parents and children with diabetes.
The goals of JDRF Israel
Funding the best medical treatment and research for finding a cure for the disease and its complications, and improving the quality of life of children and their families.
The Juvenile Diabetes Foundation in Israel acts for the benefit of its members:
The Juvenile Diabetes Research Foundation (JDRF)
The worldwide foundation for the research of juvenile
diabetes (JDRF) endeavors to find a cure for diabetes and its complication by
supporting research. The JDRF was established in 1970 by parents of children
with diabetes who believed that it is possible to cure the disease and its
complications through research. With branches from coast to coast, and
partnerships throughout the world, the JDRF allocates more funding for the
research of diabetes than does any private non-governmental
JDRF is the promoter and the main supporter of research with the purpose of finding a cure for type 1 diabetes and its complications. The organization establishes research centers throughout the world, in cooperation with governments and public bodies that support research to overcome the disease.
JDRF confronts the U.S. government with its interest of promoting medical research for finding a cure for diabetes and its complications, including the promotion of stem cell research in the U.S. Until today, the Foundation has itself funded more than 800 million dollars of diabetes research, and another 20 million dollars in special funds that support the innovative research of stem cells as a source of beta cell production, in the United States, and in the world as a whole, including research in institutes in Israel.
In the last year the Foundation started a new world
campaign “Research for discoveries” – that is intended to recruit a billion
dollars by the year 2009, to promote research for finding a cure for diabetes,
of which the Foundation has already succeeded in recruiting 667 million!
The Israeli branch, together with eight other branches of the Foundation in the world, takes part in the world effort to recruit money for our common goals: a cure for diabetes!
The Juvenile Diabetes Research Foundation Activity Report
Every year for more than 20 years the Juvenile Diabetes Association of Israel has run its hallmark activity – medical summer camps.
These camps are held for children with diabetes aged 9 to 18 - in three sessions divided by age groups – each session lasts for a week or so during summer vacation.
A medical team (including doctors, nurses specializing in diabetes, dietitians, and social workers) staffs the camps. The counselors - who work totally voluntarily - are adults with diabetes, 20 years and older, who serve as models and inspiration to the diabetic campers.
The medical camps provide an opportunity to learn self-management in an environment outside of the family. The children and teens learn how to check their blood sugar and to inject insulin and cope with various physical and mental conditions unique to their medical status. The campers are taught about how to live a healthy lifestyle, including appropriate nutrition and physical activity, which is important for maintaining blood sugar balance, and preventing complications of the disease.
Along with the medical support, life long friendships are made and the children flourish in an environment which soon becomes a second home.
Seminars for New Families
Supporting seminars are held during weekend in a hotel. It is designed for the whole family - the diabetic child, their siblings and their parents. These seminars include activities, such as workshops - teaching the participants to understand the disease and to cope with it; fun activities adjusted by age, and more. Through this weekend time, the "veteran" families the long-term members in the Diabetic Association, meet the "new-comers", and create a "social net, which enables the new diabetics and their families to get the encouragement and support they need.
This kind of an encounter inspires the families, addressing the most important massage: Together we can overcome all the challenges ahead of us!
The seminars are taking place in two forms: Seminars for families with diabetic children under age 12, and seminars for families with diabetic children ages 13 to 18.
The Juvenile Diabetes Association of Israel conducts both one-time and continuous meetings for different groups including parents, children and siblings, with the goal of providing support and tools for handling the disease. The Juvenile Diabetes Association conducts supportive meetings for parents of Diabetic children, who are in charge - de Facto - of their children's health, hosts by the social worker of the association.
The Hotline is a telephone consulting service for people with diabetes and their families. Five days a week a nurse specializing in diabetes operates the hotline assisting in a range of medical issues. In addition, a social worker at the Juvenile Diabetes Association responds to questions and concerns.
During the year, the Juvenile Diabetes Association conducts training conferences at different locations throughout the country. The national conference which takes place in November marks International Diabetes Day. There are roughly 2000 attendants each year.
At the conferences, leading professionals in the field of diabetes care, research and nutrition present the latest information regarding type 1 Diabetes. The Juvenile Diabetes Association also holds conferences for the teen diabetic population who are considering volunteering in the army or in national service. Religious families and pregnant women are also serviced at these conferences in order to fit their specific needs.
Advancing the Rights of Diabetics
The Juvenile Diabetes Association of Israel lobbies government and public agencies concerning the rights of people with diabetes; some of the issues addressed include:
Advising Diabetic families on how to address The National Insurance Institute and its committees;
Social security - entitlement to an aide in nursery and elementary schools; Transportation ministry (relating to driving licenses for people with diabetes); Participation in the military and raising military profiles of people with diabetes and the necessary monitoring of pregnant diabetics.
In addition, the Juvenile Diabetes Association actively lobbies the health ministry regarding the inclusion of new technology and medication relating to diabetes care in the insurance subsidized “health baskets”.
Lately, we succeeded in inserting an advanced blood monitoring Sensor to children and pregnant women with Diabetes to the "health basket", and proudly became among the first countries in the world to achieve this accomplishment.
The Israeli Diabetes Association arranges fund raising banquets to raise the public's awareness on diabetes, and to encourage research for finding a cure for this disease. Such fund raisings are, the Yearly Gala Banquet, the bike trip for "Sweet Future", information delivery through the media, etc.,
The National Fund Raising Day – the fund raising project lasts for a month, and includes explications and directions in schools across the country, explaining what does diabetes mean, its implications and imperilments. Simultaneously, there is a nation wide contribution collecting for research to find a cure to Juvenile diabetes.
Donation of Medical Equipment to Diabetes Clinics
Medical care is socialized in Israel; therefore, certain equipment and methods of testing for diabetics are considered superfluous. Therefore, JDRF in Israel donates a special device for blood testing (HbA1c) to diabetes clinics throughout the country. The machine is not included in the equipment budget of hospitals due to its high price. The device allows HbA1c testing on a very small sample of blood drawn from a finger, thereby minimizing the pain and discomfort of children with diabetes.
The Juvenile Diabetes Association also pays for the testing itself, which is also not included in the “health basket”. In contrast to daily testing that indicates blood sugar levels at the time of the test, the HbA1c test indicates the average blood sugar during a three- month period. Physicians use this test to determine proper treatment.
Glucose Monitoring System sensors
Thanks to the Israeli Diabetic Association, the Continuous Glucose Monitoring System sensors are partly subsidized by Israeli Medicare (Kupat Holim), for young diabetics up to 18 years old, and pregnant women with Type 1 diabetes.
These monitors show on their screens the patient's blood sugar levels every five minutes, and also indicate the tendency of the sugar levels through the day for 24 hours. The continuous monitor sensor helps balancing the patients' sugar levels, and prevents dangerous conditions of hyperglycemia and hypoglycemia.
Furthermore, The Juvenile Diabetes Association also operates a fund in order to provide and supply blood monitoring Sensors to those who did not meet the rigid criteria of the "health basket" but still are in real need for this device. The Fund is helping Diabetics from more than 35 clinics throughout the country to get the best treatment available today.
Medical Mentor Program
This project is geared towards children and teens with diabetes, aged 8 to 17. An older diabetic is matched to a child or younger teen, meeting weekly for two hours during the school year. The Mentor serves as a model in dealing with diabetes on a daily basis. Throughout the project, a relationship develops that differs from that with other friends, parents, or teachers. The relationship is built on common identification with the disease and fosters trust, positive attitude, and the importance of self-care. In addition to the individual meetings, three group meetings are held during the course of the year for all participants of the project. Such meetings are an opportunity for the children and teens to connect to one another and to realize they are not alone.
The Juvenile Diabetes Association holds a monthly forum for diabetic adults for continual support and enrichment. Discussions at the meetings focus on coping with diabetes in different realms of life including, relationships, work, during pregnancy, with crises, new beginnings and more.
The "sugar" group members, ages 20-30
The group meets several times throughout the year, raising issues that ore of interest for any diabetic at this group-age: After-the Army trips; Psychometrics (SAT) tests; Academic struggles; intimate relationships; privileges, social security (Bituach Leumi), etc,. The meetings are taking place in an informal friendly atmosphere. The purpose of these meetings is to meet other diabetic young women and men, who are – most probably - at a similar phase of their lives, go through the same processes, and confront the same challenges. The intention is to listen and learn from others experience, to associate, to assist, and most of all – to have fun and enjoy some quality time…
The adults forum – age 30 and up
Once a month a support group meeting for age 30 and up, is taking place and is opening for discussions on any issue raised by its members. The discussions are led by a professional diabetes coacher and educator. I every meeting there is a debate on issues relate to diabetes and its aspects as it reflects on every day life, i.e.: relationships, jobs and career, social integration, and so forth.
The Magazines – "Balance" and "Ad-Can"; website and Facebook page
"Balance" is being published 3 times annually; the magazine of the Juvenile Diabetes Association includes articles relating to diabetes care, research, nutrition and sport, education, social life, and more. In addition, the Juvenile Diabetes Association publishes another magazine (once a year) specially made for the religious Diabetic population and addresses its unique problems (and suggests solutions…) and fields of interest.
Apart from that, the Juvenile Diabetes Association runs a website and a Facebook page that is an effective tool for keeping in touch with the Diabetics and updating them with all the latest developments in the field, inter alia.
Since its establishment, the Juvenile Diabetes Association of Israel has supported institutions in Israel involved in the search for a cure to juvenile diabetes. Significant progress in research in recent years has contributed greatly to knowledge about the onset of the disease and its causes, as well as treatment and reduction of complications relating to the disease.
This is how we
By: Lior Tzarfati
Last year JDRF Israel is celebrating the 25th anniversary. From a small office in Nordau Boulevard, opened in Tel-Aviv in 1981, JDRF Israel has grown to become one of the largest volunteer based foundations in Israel, with thousands of members and dozens of volunteers.
The Foundation's "DNA", included several key figures: Tamar Raphael, Emma and Amnon Sirkis, Yaakov and Tzipi Shor, Shalom Tetro and Vivi Mizrahi.
These “sweet” families, who had to face the struggles of diabetes in the early 1970's, describe hard times characterized by uncertainty and frustration. Different aspects in the lives of diabetic patients like camps, holiday vacations, walks, the "hot-line", coaching projects, dietary products, diabetic friends, and a sympathetic ear - exist today but back then were considered just a sweet dream.
Emma and Amnon Sirkis are currently in their 60's and live in Rehovot. They discovered the world of diabetes in 1967, when their son Amir was diagnosed with juvenile diabetes at the age of 8. Before starting to talk about the early days of JDRF Israel, I asked the Sirkis family about their life in the late 1960's.
Emma sighs and takes a deep breath, Amnon says "The world that our son had entered into as a diabetic back then was a lot harder that the world of today".
First signs of the
Amnon says that the biggest activity carried out by the committee involved selling needles, syringes, and sticks at the smallest price possible. At the same time Emma traveled to the United States, where in New York she met Carol Lurie, who headed the American JDF. She met her for the purpose of learning about the American organization in pursuit of establishing a similar one in Israel.
The American JDF had greatly influenced the decision to establish JDRF Israel. As known, Americans like everything in large sizes and accordingly wanted to make their organization international. Emma recollects that she did not really understand what Carol was talking about and that there were immense differences between what she thought the Foundation should be and what she was told by Carol.
And then the group started to organize. At the same time a group of parents of diabetic children in Tel Hashomer Hospital had started to organize.
When the two groups started to work together, it was the birth of JDRF Israel. The Sirkis say that when they met one mother from Tel Hashomer, Tamar Raphael, they understood that she could be a strong and important force in promoting the interests of the children with diabetes in Israel.
Emma says "Tamar started engaging in intensive activity which made us quickly realize that she was a strong force. Tamar knew many people in the right places".
To know as much as the doctors
Tamar Raphael currently lives in Tel-Aviv and works in marketing academic institutions.
When the Foundation was established she left all of her previous activity and committed herself fully to volunteer work in order to promote the goals and issues of the Foundation. Adi, her daughter, was diagnosed with diabetes in 1976 when she was a two and a half year old baby.
Raphael's relationship with the Foundation began when she met an American friend, Lee Docket, founder of the American JDF. The American organization was founded by Lee Docket several years before and so Docket suggested to Raphael to try to establish a similar foundation in Israel. Docket told her that doctors were never able to tell her what the future held for her son. As a result, she decided to establish an organization aimed at supporting research and information development in any subject with relevance to juvenile diabetes, for the purpose of providing her son and other diabetic children with an adequate response to the disease.
What were the first steps of the new Israeli Foundation?
"The first goal was to find the parents of children with juvenile diabetes and to have them join the Foundation. Expanding the nation wide membership was not an easy task, considering that it was carried out in an independent manner, without dependency on any medical center. Another goal was to enter the world of research. At the time no research activity took place in Israel in the field of juvenile diabetes. The Foundation started to organize lectures for doctors, which made them want to kill me. How dare I organize lectures for doctors! We also organized many lectures for patients, and this was a shock to everyone. People did not understand that they needed to know about the disease as much as doctors".
What were the difficulties of the new Foundation in those days?
“In those days it was not acceptable to interfere in the considerations of the doctors or to ask questions beyond the most basic issues. The doctor was the factor responsible for the treatment and the patient had to obey and do as told. When the parents started taking the initiative and invited experts from abroad to lecture before doctors and patients, and independently organized medical conferences, they were perceived as a threat to the medical establishment.
It took great effort and persistence to find a group of supporting and cooperative doctors, whose contribution eventually led to the first workshop for medical students in Israel".
Raphael says that the workshop, which was financed by the new Foundation, was "revolutionary in every sense of the word". A few of the workshop participants even continued into the field of diabetes and endocrinology after graduating.
What was the added value of the Foundation in those days?
"The added value seems to be very basic by today's standards but back then it was considered revolutionary. It was the basic-primary knowledge on how to cope with the disease. The Foundation organized camps, lectures, meetings between patients, meetings between parents, and generally enabled diabetics to meet and get to know others like them. Likewise, the Foundation enabled its members to learn about innovations.
It was innovative to acknowledge the fact that parents had something to say about the disease, the treatment, who should be funded, what was important, and what was not. This issue created many disagreements in the medical world".
Raphael recollects how in one JDF conference in Milan, Italy, a mother of a diabetic child went on stage and said "No doctor knows more about this disease than me, I am living with this diabetes 365 days a year".
This statement explains the contribution of the Foundation to the lives of diabetics in the best and clearest way.