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Familial Dysautonomia Israel (FDI) Comprehensive Support Program 2024
Regarding the initiative to offer FD patients and their family members a Comprehensive Support Program, an Israeli hospital director stated: “With this disease, supporting the patients and families is a dramatic, life-saving need.”
What is Familial Dysautonomia and Who is FDI
Familial Dysautonomia (FD) is a rare genetic disorder – it is chronic-progressive, life-threatening, and incurable. FD damages the nervous system and impairs the regulation of vital bodily functions. People diagnosed with FD suffer chronic speech, vision, balance, digestive, and respiratory difficulties that worsen over time. Most difficult are acute FD attacks – indescribable misery that can last anywhere from several hours to several months; these can be so severe that a medically-induced coma is often the only care option. Despite these challenges, people diagnosed with FD and their family members make every effort to live lives filled with meaning and value.
Because it is so rare, FD is considered an “orphan disease”; it is not “economically viable” for the medical and pharmaceutical industries to invest resources in researching and creating tailored treatments or medications. For the 100 Israeli families contending with this disease at present, FD is a constant threat – 24 hours a day, 365 days a year. Between the physical challenges and pain, the near-constant need for vigilance and care, and the ever-present danger of death – it is a daily struggle for FD patients and their family members to lead as normal a life as possible. It is this dramatic insight, of seeking to live a full life, that led FD contenders and their loved ones to establish FDI.
Familial Dysautonomia Israel (FDI) was established in 1983 to serve as a supportive “home” for FD patients and their family members. FDI works to advance medical research and treatment, and advocates for the welfare and rights of FD patients and their families. FDI also leads public awareness campaigns to prevent and eliminate FD through genetic screening and testing. FDI operates support programs customized by age, place of residence, religious affiliation, and gender. FDI is operated by members and a governing board comprised of FD patients and their family members. The FDI team is rounded out by three external volunteer advisors and one full-time paid program director. With philanthropic investment, FDI aspires to maintain existing programs and expand the services we can then offer our members beyond what is currently possible from modest government funding, donations, and annual membership fees.
The FDI Support System
FDI recently formalized the support services we have developed over the years into a “Support Program”. A structured and comprehensive set of services personalized for each FD patient and family. It includes:
– Professional Staff: Individual guidance by counselors. We are in the process of locating the funding necessary with which to recruit a social worker, a role essential for the individuals and for assisting with government institutions.
– Operating support groups for FD patients and family members – topics include: parenting, overcoming daily challenges, forming healthy social and romantic relationships, coping with the loss of friends, and long-term planning.
– Relaxation and Recreation Activities for FD patients and family members: enrichment workshops and respite.
– Integration into Israeli Society: advancing life skills, cultivating opportunities for employment, and independence.
Summary and Request
Today, FDI manages to reach impressive results; with increased philanthropic partnership, we can maintain and expand the support services that are so critical for our members.