A research seed money fund in the amount of $50,000 has been established at NORD for the study of congenital hyperinsulinism (HI). The fund provides $25,000 for two years for a scientific, pre-clinical research study related to the diagnosis and/or treatment of congenital hyperinsulinism in neonates or children. The deadline for submission is May 4, 2012. The funding is made possible thanks to the generosity of the Mario Batali Foundation which is fully funding this opportunity. This program is part of the Mario Batali Foundation Pediatric Rare Disease Research Fund. CHI is overjoyed that congenital hyperinsulinism is the first disorder chosen for funding by the Mario Batali Foundation at NORD. The Foundation was established by the world famous chef, restaurateur and author, Mario Batali.
When NORD first approached its member organizations about this opportunity, we were hopeful that congenital hyperinsulinism research would be selected and we wrote a letter supporting the idea. We thought that HI would be a really good fit for the Mario Batali Foundation. Food is at the center of life with congenital hyperinsulinism and great food is what Mario Batali is all about. Babies and children with congenital hyperinsulinism must eat carbohydrates on a very regular schedule in order to ensure that brain damage from hypoglycemia does not occur. The right kinds of foods are part of the medical regime for these kids. A missed meal or snack can have major neurological consequences. Moreover, many of these children develop an aversion to eating that takes years to work out and correct. There is such a contrast between the culinary pleasure that Mario Batali has given the world and the hard reality of mealtime for HI children. We are hopeful that this fund will play a major role in improving the lives of children living with congenital hyperinsulinism.
We feel very fortunate that the Mario Batali Foundation has chosen to partner with NORD on this project. NORD has years of experience administering rare disease research grants and they have written an excellent “Request For Proposal (RFP).” They also have a very refined system for evaluating the proposals making use of the expertise of their Medical Advisory Committee. The RFP is available on the NORD website and the link is included here: http://rarediseases.org/medical-professionals/research-grants. CHI is hopeful that there will be many innovative and cutting edge approaches to congenital hyperinsulinism research among the proposals received by NORD. CHI is also hopeful that HI researchers will continue to contact CHI with their research ideas as we raise CHI research funds and continue to seek out other sources of funding for HI researchers.
