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 Statistics:
Each year,
doctors find a brain tumor in over 200 Rhode
Islanders and a spine tumor in even more.
Nonetheless, these potentially devastating
tumors can be considered “orphan diseases”: They
afflict relatively few people compared to other
medical conditions and so attract fewer
resources to fight them. Consequently, as these
patients and their families wage what may be the
struggle of their lives, many of their needs go
unanswered.
In Rhode Island:
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People who
are grappling with a tumor of the brain or
spine lack local support groups for
interacting with others who understand the
special challenges they face..
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Patients and
their relatives have few sources of Rhode
Island-specific information to help them
make crucial decisions, find top-quality
treatment near home, and locate clinical
trials.
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Even
middle-class, insured families can suffer
financial hardship when costly medical bills
pile up, particularly if the illness keeps a
patient or caregiver from earning a
paycheck.
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Researchers
could use more funding to identify risk
factors within the state for these possibly
disabling or life-threatening disorders.
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Patients
with brain or spine tumors await additional
clinical trials of promising remedies, since
drug companies tend to focus on other, more
common diseases.
A state that
proclaims “hope” as its motto can do better than
this. The Rhode Island Brain and Spine Tumor
Foundation (RIBSTF) puts hope to work for
patients and their loved ones. We strive to make
a big difference in the smallest state by
offering information, inspiration, support, and
practical help for Rhode Islanders who have been
affected by these tumors.
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