Raising awareness for Epilepsy
There are over 80,000 suffering from Epilepsy (1% of the population) in Israel today.
About 70% have reached a balance by using medication and the other 30% are defined as resistant to drug treatment.
Purpleheaven is a non profit organization active in raising awareness for Epilepsy and creating a society that is more accepting and aware in order to improve the quality of life of those suffering from Epilepsy.
Between the dates of 03.01.2016 and 07.01.2016, we took part in the Political Week that was held and organized by the Student Union of the Seminar Hakibbutzim College.
The Union is a group that unites all the students of the college. Together with representatives of the Union and independent initiatives of other students, they promote social topics that arise.
The event, in its fourth year has become a tradition of the college, and included political lectures, workshops, panels, exhibitions, tours and a fake ballot box. The Union told us that Political Week is considered a unique event in the academic world in Israel, since it is accepted that home room teachers should consolidate their political identification against all the designing powers of society.
During this week the college students were exposed to various opinions of organizations and non profit organizations, sometimes opposing each other. Several political parties and organizations lectured and presented the issues, difficulties, integration and differences in the Israeli society. With the help of several volunteers, that came and contributed, together with us to enrich the knowledge of the students with information about Epilepsy, about the coping of those that suffer from it on a daily basis, the difficulties and different types of Epilepsy. During this week we realized how much the students did not know, about the large amount of people with Epilepsy that just wanted to share, consult, talk and of course sign up to our organization in order to receive updates about our activities.
This is the first year that our organization has participated in the Political Week project and there is no doubt that we will be happy to make this a permanent participation.
Epilepsy causes many issues in society since the lack of knowledge causes people who have not learnt about it to question the readiness of the person suffering from Epilepsy to be placed in certain frameworks, such as: Military service, education, employment and more. Since Epilepsy has over 40 different strains there is a big difference in the needs of each person living with Epilepsy.
Good Deeds Day
Good Deeds Day is an international event that takes place every year and puts good deeds at the top of the public agenda in Israel and around the world.
The main theme of this day is that a good deed can be anything – starting from a smile to someone on the street, inviting a family member for lunch or visiting your elderly neighbor’s home and volunteering in projects for the good of society and the environment, such as: renovating and painting day care facilities and hostels, cleaning beaches, intergenerational meet ups, fun days for needy populations, building communal parks and more.
On Good Deeds Day we are all partners: Men and women, young and old, believers of all faiths – everyone gets together as one body, for the joint goal of doing “good” for others and the environment. This project has crossed borders and has become an international cause that unites people due to its simplicity and ability for everyone to connect and initiate.
Together with the wide range of good deeds in Israel, this positive initiative has continued spreading around the world and has brought tens of thousands of people to do something good in the framework of this project, in Rome, Costa Rica, Panama, Australia, America, Canada and more.
The Good Deeds Day takes place in Israel on the 15th of March 2016, and globally on the 10th of April, 2016.
Here at the Purpleheaven Organization we take part in the Good Deeds Day of the Bar Ilan University where we pass over information about Epilepsy, answer questions, present the daily difficulties of those suffering from Epilepsy and talk about our future activities.
Do you want to participate in Good Deeds Day with us? Contact us and together we will raise awareness for Epilepsy.
Raising Awareness in the Ministry of Education
Here at the Purpleheaven organization we have deeply researched the issue of lack of awareness of Epilepsy, and have discovered that there is no body or educational facility that takes it upon themselves to teach about Epilepsy.
We have the personal knowledge of experiencing a daughter and sister, who for over 10 years of our lives had to deal with the embarrassment and fear that people would know, and the difficulties of dealing with several government institutions.
Some of us come from the field of Public Relations and know how to attractively and practically communicate with the young population in order to enrich their knowledge about Epilepsy. The organization is guided by Mrs. Galit Greenberg who is responsible for the diplomatic connections of the Ministry of Education and has given over 5,000 lectures on the subject of Epilepsy in different schools around Israel for 11 years.
On 22.12.2015 we requested that the honorable minister Yaakov Margi who was the chairman of the education, culture and sport committee to erect a committee in the Israeli Knesset where the supervisor of the health ministry of the education system, Neurologists specializing in Epilepsy and representatives of Eyal – the Israeli Epilepsy Association would be present in order to raise awareness for Epilepsy in the Ministry of Education.
We at Purpleheaven have constructed a study plan that will interest the students. We believe that in order to enrich the new generation and teach them more about Epilepsy they have to start learning about it from 7th to 12th grade in high school. These days we are promoting this cause with the Ministry of Education.
We are sure that if we create a session of just one hour on just one day on Epilepsy in all the high schools in the State of Israel we will be able to do the following:
Strengthen awareness amongst the younger population
Help the acceptance of the different in all schools
Enhance the social life of those suffering from Epilepsy in the State of Israel
Allow the “Coming Out” of all those suffering from this illness, so that they can tell their friends what needs to be done for them during a seizure.
Since we are focusing on a population that is the next generation of our country, together we will be able to build a new generation that has been brought up and educated on Epilepsy, and then we will be able to accept those different from us, like those suffering from illnesses or just different from each other.
Tel Aviv in Purple
Purple Tel Aviv is the first step of “Purpleheaven” to raise awareness for Epilepsy. The unwritten will of “Eden” was to raise awareness for Epilepsy and so we decided to produce an event that would test the response of the public and the will to enrich their knowledge about Epilepsy.
In order to do this we were assisted by singers that Eden loved and even admired. The performers that took part were: Rotem Cohen, The Allstars, Shauli Badishi, Eliad, Strong Black Coffee and the fashion designer Dorin Segol who held a fashion show together with several models that all wore purple, and were especially designed for this special evening that was hosted by Noa Meyman.
Over 700 people attended the event that took place in the Wohl Amphitheatre at Ganei Yehoshua, amongst them, members of parliament, public figures, Epilepsy sufferers and an audience that came to contribute to the event. The people that took part came to set the tone, to identify, strengthen and participate in promoting our goals for Epilepsy in Israel.
The event was covered by all the media’s and this is how we understood the requirements for our organization: During the event we were exposed to many Epilepsy sufferers that had just started their process of “coming out”, where they had told and shared their stories on social media about having Epilepsy in their childhood or are presently suffering from it. So many people realized that they did not have to be embarrassed and hide the fact that they suffer from Epilepsy.
The Purple Tel Aviv Project is planned to be held once a year during the month of September.
Together with the performers and beloved singers of the population, we will be able to develop awareness about Epilepsy, and enrich the knowledge and show those that are suffering that they can have a normal social life, a good and happy one.
Whilst working on the “Purple Tel Aviv” project that took place in the Wohl Amphitheatre at Ganei Yehoshua we thought about how we could get the party – going population and the nightlife industry to enrich their knowledge about Epilepsy. Since the nightlife and party – going people are an inseparable part of society, we wanted to pass our educational message on to them at neighborhood pubs close to their homes.
The “Van Gogh” Vodka Company happily and with no hesitation chose to volunteer as well as the “Touch” energy drink company.
They tried to create a purple cocktail made out of Acai Berry Van Gogh Vodka and Acai Berry Touch energy drink, after several experiments and measuring the correct amounts we created the Purple Eden Cocktail.
The cocktail was in the international Epilepsy color – Purple! This created awareness amongst students due to the color of the drink and information about Epilepsy that was placed on the pub tables in the form of flyers.
Over 50 bars all over the country took part and everyone wanted to help our cause.
The campaign brought on many questions, such as: “Why do you need to raise awareness for Epilepsy?” and caused the population to show interest and enrich their knowledge of Epilepsy.
We called the cocktail Purple Eden since purple is the color that characterizes Epilepsy and in memory of Eden who we created the organization “Purpleheaven” for.
We would like to take this opportunity and thank again all the pub owners and employees, who very kindly explained about Epilepsy, The Van Gogh and Touch Companies that volunteered and helped us in the entire creation process and distribution.
We would like to emphasize that the drink is meant to raise awareness due to its purple color and is not recommended for those suffering from Epilepsy.
Do you have your own idea?
The Purpleheaven organization is an organization with an open mind and listening ear.
Most of the suggestions we have taken from you, those suffering and the families of those with Epilepsy in Israel.
We are more than happy to hear your ideas on how to raise awareness for Epilepsy.
The more minds that work to promote this issue, the better the effectiveness and achievements, we will reach.
If you have an idea on how to promote awareness, partnerships, artists and performers that want to volunteer to perform, universities, colleges and other organizations that want to take part or any thought that seems suitable – let us know.
Write to us on our “contact us” page and we will gladly get back to you.
The people behind the “Purpleheaven” organization
Founder of the organization
Chairman of the organization
Founder of the organization
Spokesperson of the organization
Founder of the organization
Neil Ben Shahar
Member of the management committee
On the 24th of February, 2015, our daughter and sister, Eden Tveria R.I.P. passed away at the age of 18.
Eden, who had suffered from Epilepsy for ten years, went through the process of changing perception throughout her life. In the beginning she was very embarrassed about her illness, she never spoke of it, never shared, she was afraid of the reactions of her friends.
Three weeks before Eden passed away she uploaded a post on Facebook where she had written:
“Children and teenagers with Epilepsy feel as if they have a purple stain they have to constantly keep hiding, but a purple stain is not so bad!
Let us show that there is no reason to hide the purple stain and upload a photo with a purple stain on your hand, foot and even on your face and tag #EpilepsyPurpleSpot.
Let’s raise awareness for Epilepsy”!
During the first week of mourning, as the family of Eden, we understood that this is the mission she left us with as her unwritten will that we need to fulfill.
We started the Purpleheaven organization in order to raise awareness for Epilepsy. This way any person suffering from Epilepsy could share, talk and feel complete with themselves, because Epilepsy is a part of us. Along the way more people with the same vision joined us for the journey we would start one day.
We are an autonomous non profit organization, neither political nor governmental.
All the income of the organization is meant only for the goals of the organization and the funding of promoting the activities that we bring to you:
The public supports us. As part of our basic principles that are based on honesty, integrity and trust. We have an obligation towards you, to show you where your money goes.
Since this is the first year of our activities we do not have financial reports yet, but as soon as we hand in our yearly report, we will attach all the financial information about our activities.
To donate to the organization:
The Purpleheaven organization is a non profit organization.
The budget of the organization activities is based on the support of the Israeli society – The public and businesses.
To donate by bank transfer:
Account number 07230094
Registered organization 580607273