Activities

Details of Activities – March 2005 – December 2006

1. On March 6, 2005 the Association for Fighting Off Best Disease was set up. Best is a disease which affects children and causes functional blindness. According to experts in the field, finding a cure for this disease will assist in the breakthroughs necessary for curing the other macular diseases of the retina.
2. By the end of April 2005 three Best research teams were established: at the University Hospital, Hadassa Ein Kerem, Tel Aviv University and Ben Gurion University.
3. On April 3, 2005 the Best Association internet web site was set up ( WWW.BEST.ORG.IL ).
4. On May 29, 2005 representatives of the Association were invited to attend a session of the Knesset Committee of Labor, Welfare and Health. The aims and methods of reaching the goal of healing children with this difficult degenerative macular disease were presented. The Committee recommended that the State budget the required research.
5. On June 2, 2005 I met with the Honorable Chairman of the Knesset Finance Committee, who promised to work on behalf of budgeting the research, and he indeed kept his promise.
6. On June 14, 2005 our representatives met with the Honorable President of Israel, Mr. Moshe Katsav. The President promised to assist in obtaining government support for research on the disease.
7. In early July 2005 our representatives met with representatives of the United States Department of Health. As a result of the meeting, the Association received written recognition from the American government.
8. On July 15, 2005 the first international conference on Best disease research was held at Tel Aviv University. The conference dealt with novel approaches in researching the disease.
9. On April 29, 2006 the second international ARVO conference will be held in Miami, USA. ARVO directors have already approved the conference.
10. There is a written government promise that research on blindness prevention will be budgeted in 2006.
11. A 2005 financial report of the Best Association will be submitted for the approval of the registrar of associations after it will be approved by the review committee and the legal advisor.
12. On January 3, 2006 the Association’s Scientific Council was set up; it consists of over 50 scientists and about 14 heads of hospital ophthalmology departments. The Council will lead the way in promoting research to heal diseases of the retina, both by means of existing research facilities and by the World Center for Eye Care Research which will be established in Israel. The World Center will be a mighty base for national and international cooperation, to speed up research and attitudes towards achieving breakthroughs in diseases of the retina in general, and particularly in those diseases that cause blindness. The Association is an international one, and as such it will enlist researchers and funds from around the world.
13. Associations of friends were set up in the United States, England and France.
14. The general meeting of  February 7, 2006 focused on presenting the organizational layout of the Association, its regulations, the program of the World Center for Eye Care Research, an initial delineation of the business plan, and the ways to raise funds in Israel and abroad.
15. The Marketing and Publicity Committees, the Commercial Committee and the Scientific Board are preparing detailed plans for reaching the short and long-term targets.
16. The Scientific Board has begun to activate three sub-committees on the following subjects:
    1. Mapping of available research grants in Israel and around the world on the subject of blindness prevention.
    2. Developing contacts with the European Union for promoting research
    3. Prioritization of research fields as the first step towards distribution of "Kol Koreh".
17. An interministerial Steering Committee has been established between the relevant   government offices to promote the founding of The National Instiute for Eye Health Research and Blindness Prevention.
18. A National Forum has been established with the participation of the heads of associations for visually-impaired  in order to join forces to advance the research and development of drugs and treatments to delay eyesight deterioration, and to treat diseases which cause blindness.
19. In its meeting with the Minister of  Health, Mr. Ya’akov Ben Yizri, held on July 9, 2006, the Association presented the  minimum amount of  funds needed to advance the research – a sum of about $500,000 during each of the next few years. We thank him for his willingness to do everything in his power so that research in blindness prevention will be allocated this amount. The Minister and his Ministry support the establishment of a network of Israeli research centers that study blindness, including the establishment of a European research network.  We were encouraged by his embracing the Association’s plan to set up a Head Center that would include international activity, under the professional management of the Science Council. The importance of the idea of establishing a national institute for researching eye care, with the aim of advancing research into blindness, was discussed during the meeting. Such an institute, if it will be set up in the Negev, will be a source of employment for quality personnel, will help develop the area and will be a geographical center for neighboring states.
20. We have, since December 2006, been actively setting up an international mechanism comprised of investigators from around the world, in order to accelerate the pace of intensive research into Best Disease. In addition, we appeal to private parties, institutions and international foundations for research support.