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What
is Olivia’s Heart Fund?
Olivia’s Heart Fund is a nonprofit organization incorporated
in the state of RI. OHF was founded by Peter and Julie Ostiguy
in memory of their daughter Olivia who was born with Hypoplastic
Left Heart Syndrome (HLHS).
OHF’s mission is to fight back against the number
1 birth defect, Congenital Heart Defects (CHD), by funding
vital and promising research, increasing public awareness
and education, and supporting those affected by CHD.
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Why
is supporting Olivia’s Heart Fund important?
In the United States, a
child is born with a congenital heart defect (CHD) every 15 minutes.
Congenital heart defects are a leading cause of infant and stillborn death.Of the 40,000
children born a year with a congenital heart defect, thousands will die before
reaching their first birthday.While more children born with congenital heart
defects are surviving into adulthood due to recent surgical advances, children
with more complex heart defects are still dying.
Despite the prevalence and seriousness of CHD, there is a lack of federal
research, surveillance, and education and awareness activities. Surgeons and
medical research scientists are continuously striving to make advancements to
allow these children to live. We need your support to fund this vital research
to decrease the mortality and occurrence rate of babies born with CHD.
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What
does my contribution go to?
OHF is a volunteer run organization and our board members
do not receive compensation so that 100% of a donor’s
contribution goes directly to fulfilling our mission.
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How
does my contribution help to fund research?
The scientific and clinical research to be funded will be
selected by a Medical Advisory Board appointed by OHF’s
Board of Directors. OHF intends to seek applicants for medical
research grants upon funding reaching approximately $200,000.
The scientific and clinical studies to be funded will be
selected by a Medical Advisory Board, consisting of medical
professionals specializing in Pediatrics, Pediatric Cardiology
and Pediatric Cardio-Thoracic Surgery. Currently, Emile
Bacha, MD has been appointed Chair of the Medical
Advisory Board.
A grant application process will be used to select grant
recipients. Grant applications received from researchers
will be evaluated by the Medical Advisory Board based upon
a number of criteria, including relevance of the research to OHF’s mission.
The recipient of any grant from OHF must use the funds awarded
for the specific purpose for which they were originally
intended. All grants will be made only to non-profit, federally
tax-exempt qualified organizations.
Olivia’s
Heart Fund has determined that the grant process, directed
by a Medical Advisory Board, is the most effective way to
reach and fund critical research. Our goal is to reach out
to scientists and surgeons in the field who are conducting
promising research vital to decreasing the mortality rate
of infants and children with CHD and the prevalence of CHD. Due to lack of critical funding,
researchers, doctors, and surgeons are not able to make
progress quickly. The funding will help these researchers
to conduct the studies and have the data necessary to then
apply for larger grants with organizations such as the NIH,
American Heart Association, etc so that advancements can be made.
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Is
my contribution tax deductable?
Olivia’s Heart Fund is pending 501(c)(3) tax-exempt
status with the IRS. Please consult your tax advisor regarding
your contribution.
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Can
I have a fundraiser to benefit OHF?
Yes! If you are a tax exempt organization, such as a church or club interested in holding a fundraiser to benefit
OHF, please contact us by e-mail contact@oliviasheartfund.org
or by phone 401.263.8854.
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How
do I volunteer for Olivia’s Heart Fund?
OHF is looking for volunteers for special committees, upcoming events and programs.
For more information on how to get involved, please contact
us by e-mail contact@oliviasheartfund.org
or by phone 401.263.8854.
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