|
The
Familial Dysautonomia Hope Foundation, better known as FD Hope, was
founded early in 2001 by several families with children with
Familial Dysautonomia. FD Hope was formed to expand and
accelerate top-rate scientific research aimed at finding a cure and
improving the lives of the children and adults with FD.
In our relatively short history, we have accomplished a great deal
in the pursuit of our mission. FD Hope’s activities reflect
our mission and therefore fall in three general categories:
Research, Outreach, and Support. These are some of FD Hope’s
accomplishments since its creation:
Clinical and Research-Related Programs
-
Funded FD research
to find a cure
and
improve treatment options at the Laboratory for Familial
Dysautonomia Research at Fordham University and Sackler School of
Medicine, Dept of Human Genetics and Molecular Medicine, Tel Aviv
University, Israel.
-
Established the
David Rancer Memorial Fellowship in support of outstanding
research by a graduate student in the field of FD research. This
fellowship, set to begin its third year, is currently held by Jinsong Qiu, of Fordham University.
-
Initiated the first
ever conference on Familial Dysautonomia at the National
Institutes of Health, Bethesda, MD. FD Hope participated in the
planning of the conference and provided a speaker for the
conference.
-
Sponsored
attendance at NIH conference for Danish researcher whose research
was relevant to FD and who has now gone on to pursue further
research in FD.
-
Attended Daily
Digestive Week conference (largest international conference on
gastrointestinal issues), maintained an informational booth and
sponsored a meeting on GI issues in FD.
-
Conducted first
ever patient-based survey of GI issues and provided results to
researchers and clinicians.
-
Produced 40 page
booklet entitled “The Gastrointestinal Tract in Familial
Dysautonomia” for medical professionals.
-
Funded FD research
at Hadassah
-
Obtained inclusion
of FD in University of Texas nutrition study
Outreach and
Advocacy
-
Provided petition
and position statement to the American College of Obstetricians
and Gynecologists (ACOG) supporting the inclusion of FD in
Ashkenazi Jewish carrier testing.
-
Established formal
outreach program in partnership with well-known Rabbis which
provided Reform and Conservative communities throughout the
country with information about FD and carrier testing. Future
programs will target other Jewish communities.
-
Sponsored a meeting
on Jewish Genetic Disorders in Jacksonville, Florida
-
Provided
educational information about FD and carrier screening at Jewish
genetic disease programs in Albany (New York), Baltimore
(Maryland), Charlotte (North Carolina), Houston (Texas), Los
Angeles (California), Providence (Rhode Island), and San Francisco
(California)
-
Provided
information on FD and sponsored ads about carrier testing for
several Jewish publications, including The Forward’s special
edition on Jewish Genetics.
-
Provided press
releases on discoveries in FD research for Jewish and general
press agencies
-
Published biannual
FD Hope newsletter, The Spirit of Hope
-
Created and
maintain official FD Hope website, a source of information for
families and professionals
-
Promoted and
facilitated the establishment of labs which test for FD
-
Maintained updated
information on FD testing sites
-
Presented lectures
on FD to medical communities in Madison (Wisconsin) and
Winston-Salem (North Carolina)
Family Support and Education
-
Provided resources
and support for families on FD Hope website
-
Provided
educational materials for physicians who care for individuals with
FD
-
Established and
sponsored FD-Docs, an internet list group where medical
professionals who treat individuals with FD can exchange questions
and information
-
Created Focus on
Families, a special newsletter insert for families with FD
-
Provided letters of
support for advocacy efforts promoting legislation beneficial to
families with FD in California, Florida, and New York.
-
Created
professional list group for therapist who work with individuals
with FD to confidentially share ideas and suggestions.
-
Encouraged the use
of Brain and Tissue Banks by members of the FD community.
|
