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: professional counsellors and a
social worker for individual guidance, assistance, and representation in dealing 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, day-trips, and
vacations.
- 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.
Please consider supporting the initiative as a whole, or any element
that will advance your company’s/foundation’s
giving agenda.
Thank you for taking the time to read and consider this
proposal. If you have any questions,
please contact:
Amichai Grinwald, Executive Director FDIPartnerships@GMail.com +972_54_570_1415