The "Special Needs" Foundation
The "Special Needs" Foundation is run by an external and independent committee comprised of the Chairman Menachem Tulsinski (a lawyer), Mrs Shlomit Liraz (a mother who lost two children to FD) and Mr. Tovia Eldan (former financial attaché to Korea).
Requests are made through the families' social worker who supplies a dossier of the family and the families' needs and as well as their request. Because of the sensitive nature of the subject matter, every request is handled with the utmost discretion and only the committee members themselves, the social worker and the foundation's treasurer have knowledge of who received help (financially strapped families, new immigrant families and families who take care of several ill children). This help enables the parents to provide for their child's medical and educational needs.
In Israel today, there are 112 patients with FD out of a total of 96 families (some who have a number of children with FD in the one family.) There are nine families known to us with more than one ill child and there are families with 3, 4, and 5 children with FD in the one family. Up until a few years ago, most children did not survive their childhood years. Today with improved medical care, paramedical treatments and rehabilitation treatments, a third of the patients are older than 18.
Purpose and Goals of the Foundation:
Financial aid for the acquisition of medical equipment and essential services which are not available through the standard health insurance such as:
- Physiotherapy for strengthening weak muscles necessary for balance, walking and correcting sclerosis. According to the national health plan, adults are entitled to only 12 physiotherapy treatments a year.
- Respiratory physiotherapy: FD patients suffer from repeated lung infections because of the aspiration of liquids and food into the lungs. Respiratory physiotherapy drains their lungs.
- Participation in the payment for the services of a speech therapist. The children have difficulties speaking and swallowing because of nerve problems in the muscles of the face and jaw.
- Financing medical treatments that are not include in the medical plans such as: special operations and dental treatments. FD patients have an increased level of plaque on their teeth and are in need of multiple teeth cleanings by a trained dental hygienist. In addition, because of general problems with lack of feeling in the mouth also, FD patients tend to cut and injure their tongue and require treatment of the injuries and special guards for their teeth. None of these treatments are covered by standard health insurance.
- Participation in psychological treatment.
- Participation in the purchase of essential medical equipment such as: special feeding equipment, a device for measuring blood oxygen level, a blood pressure machine, and an inhalation machine. Participation in the purchase of an adjustable bed so the FD patient can lie with their head elevated to improve their lung function and to elevate their legs to improve the blood flow to the upper areas of their body.