Julie Raskin Read about how the Pennsylvania McLaughlin Family is fundraising for Congenital Hyperinsulinism International while raising awareness. Julie Raskin: I am so impressed that you and Jack have taken the initiative to organize “Dress Down Days” at school to benefit Congenital Hyperinsulinism International, the organization dedicated to improving the lives of patients with congenital hyperinsulinism. You … Read more
Last Monday, March 4, Congenital Hyperinsulinism International and thirteen other patient organizations presented a program aimed at raising awareness in the state of New Jersey of the plight of people living with rare diseases. NORD and BioNJ, the Biotech trade organization for New Jersey, supported our efforts to deliver this presentation which took place at … Read more
On February 28, 2013, Congenital Hyperinsulinism International held its second “rare” event in honor of the 6th Rare Disease Day in Montclair, New Jersey at the historic and beautiful Van Vleck House. The purpose of “A Very Special Cocktail Party” was threefold: to raise awareness of the needs of all rare disease patients, to share … Read more
Julie Raskin: CHI is thrilled to learn that you have been given an endowed chair at Cook Children’s. This is very exciting and a great step forward for the whole field. Congratulations! What will this mean for your work and the future of the Cook Children’s Hyperinsulinism Center? Paul Thornton: Yes, this is a very … Read more
As parents of children with congenital hyperinsulinism (HI), we often suffer heartbreak and loss. There is so much to mourn: parents of babies diagnosed at birth never get to experience the normal joys and normal anxieties of caring for a newborn. Those whose babies are diagnosed after several months never return to the innocent phase … Read more