| F.A.Q. |
Frequently Asked Questions about Olivia's Heart Fund 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. Why is supporting Olivia’s Heart Fund important? Thanks to advancements in technology, the population now living with congenital heart defects has reached one 1 million adults and 800,000 children in the United States. Unfortunately, there are still babies and children dying from this disease. Every year, thousands of babies will die before their first birthday due to congenital heart defects. It is the leading cause of stillborn and infant mortality and the no. 1 birth defect in the United States. Despite the prevalence and seriousness of CHD, there is a lack of federal research, surveillance, and education and awareness activities. Olivia’s Heart Fund aspires to be a premier organization in Southern New England with a focus on education and research of congenital heart defects. We seek to fill a critical gap in the disproportionately under-funded and under-publicized no. 1 birth defect - congenital heart defects. Our mission is imperative to the future of children born with CHD and the Medical Communities who care for them. What does my contribution go to? OHF is 100% volunteer run and our board members do not receive compensation so that 100% of a donor’s contribution goes directly to fulfilling our mission. 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 significance 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, but due to lack of critical funding, 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. Is my contribution tax deductable? Olivia’s Heart Fund is a non-profit organization with 501(c)(3) tax exempt status. Donations are tax-deductable to the fullest extent of the law.. Can I plan a fundraiser to benefit OHF? Yes! If you are interested in planning a fundraiser to benefit OHF, please contact us by e-mail contact@oliviasheartfund.org or by phone (401) 263-8854. How do I volunteer for Olivia’s Heart Fund? OHF is looking for volunteers for 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. Frequently Asked Questions about congenital heart defects What is CHD? A congenital heart defect is a heart malformation present at birth. Common problems include a hole in the heart and/or parts of the heart that are too big, too small, missing, malformed, or in the wrong place. There is no cure to date for CHD. Most require surgical repair early in life and a lifetime of cardiac care. Some may even require multiple surgeries and/or heart transplant. Who does CHD affect? CHD can affect anyone. It is not blind to gender, race, age, or ethnic background. How many CHDS are there? According to the American Heart Association, though research is ongoing, at least 35 defects have now been identified. What causes CHD? In most cases, the cause of CHD is unknown, although there is evidence that genetic and enviromental factors could increase the risk of a baby born with CHD. |
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Fighting back against congenital heart defects
-so that no child's battle is ever in vain.
-so that no child's battle is ever in vain.
Olivia’s Heart Fund is a non-profit organization with 501(c)(3) tax exempt status. Donations are tax-deductable to the fullest extent of the law. Olivia’s Heart Fund | P.O. Box 864, North Kingstown, RI. | (401) 263-8854 | www.oliviasheartfund.org |