ASSOCIATION FOR FIGHTING A-T
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Mission Statement
The Association For Fighting A-T disease funds the following services for the benefit of A-T patients with A-T and their families: The National A-T Clinic One of our most significant achievements has been the establishment of the first Centralized Treatment Clinic in Israel for children with A-T in the Safra Children’s Hospital - Sheba Tel HaShomer in 2004. The Clinic offers diagnosis, treatment and rehabilitation in immunology, neurology, respiratory/pulmonary dysfunction, endocrinology, oncology, orthopedics, gastro, swallowing disorders and physical therapy. It establishes an overall clinical and preventative care plan for patients at the Clinic as well as continuity of care planning to be implemented by community doctors. Today the A-T Clinic in Israel serves as one of the four leading centers in the field of research and treatment of A-T in the world. Its team of professionals conducts groundbreaking research and collaborates with other clinics around the globe such as the A-T Clinic at the John Hopkins Hospital in Baltimore, Maryland. The Clinic is recognized by the Ministry of Health as the official national treatment clinic for children with A-T, granting patients from all the HMOs eligibility to receive medical and therapeutic interventions. Respiratory Physiotherapy A-T patients gradually develop a chronic lung disease expressed as chronic changes of the respiratory system and as a result, the ability to breath properly is lost and the lungs become filled with mucus. The immune deficiency causes repeated infections of the respiratory system that develops further the lung disease. Respiratory system infections are the main cause of death among A-T patients. Therefore, respiratory physiotherapy is especially crucial for A-T patients as it helps them keep their lungs clean and prevent phlegm accumulation, which can cause irreversible damage to the lungs. Doctors and experts recommend that patients' lungs be cleaned at least twice a week. It slows down the progress of the horrific disease and improves the patients' quality of life. Children with A-T receive weekly paramedical treatments in their homes by local professional physiotherapists, which has numerous advantages: it alleviates the financial and physical burden of travelling to clinics and hospitals across the country, patients enjoy the benefits of general physiotherapy which improves mobility capabilities, and it maintains the relationship between patients and the National Clinic, thus ensuring effectiveness and consistency in patient care. Patient and Family Support Services Due to the complicated nature of the disease, families with children with A-T are in need of help in various areas. This assistance is especially important as many families struggle to make ends meet and cover basic needs amid the outbreak of the COVID-19 crisis, its effect on their financial situation, and the decline in their financial ability due to the numerous treatments and high costs. Thus, the Association helps exhaust and promote patients’ rights vis-à-vis national health organizations and government institutions. It assists in the purchase of rehabilitative equipment, funds chest physiotherapy treatments, which are not included in the general health basket, and offers recreational programs and emotional support for families members. A social worker is also available to help families navigate the health care system and access supportive services. Medical Equipment Patients with A-T are wheelchair-bound from an early age and their neurological disease causes respiratory muscle weakness and further respiratory deterioration. As part of its support services, the Association provides diverse medical equipment such as medical scooters, wheelchairs, walkers, computers, laptops, respiratory equipment and more. The Association for Fighting A-T Disease holds a Midot recognition, which indicates the organization programs as effective in impacting their target population and solving problems and challenges. Unfortunately, similarly to other orphan disease centers in the country, the Clinic does not receive government funding. The Association for Fighting A-T Disease sustains all operational expenses. It is completely funded by donations from philanthropic foundations, private donors and businesses – all of which were significantly decreased due to the current Covid-19 crises. The Association’s Annual Fundraising Event, a central source of income over the past years, will not be held in 2020.
About This Cause
A-T (Ataxia-Teleangiectasia) is a very rare complex, progressive multi-system disorder. Its most visible manifestations are ataxia (difficulty in coordinating movements), which later develops into severe neuro-motor dysfunction, frequent infections of the throat, chest and sinuses (caused by immune deficiency), and telangiectasia or red ‘spider veins’ in or around the eyes. The condition also carries increased risk of developing can