Julie Raskin 
Ben Raskin-Gross and Julie Raskin participated in Rare Across America initiative sponsored by the EveryLife Foundation. This initiative empowers advocates to meet with the staff of members of Congress at their local district offices. Ben and Julie shared their personal stories and advocated for issues of great importance for the congenital hyperinsulinism and broader rare … Read more
(The following is shared by HI parent Felicia Huffman:) When my daughter, Jilani Rose, was diagnosed with congenital hyperinsulinism (HI) as a baby, our world changed overnight. She underwent a 98% pancreatectomy — a lifesaving procedure that came with a lifelong consequence: the development of insulin-dependent diabetes. We’ve come to view this transition through both … Read more
Last Wednesday I returned from an unforgettable jam-packed 8 days in Copenhagen. I was there for 3 reasons: 1) To provide subject insight for the shooting of a documentary film about hyperinsulinism; 2) To co-create the CHI Family Conference in Copenhagen with Henrik Christesen and his incredible team at Odense University/Hans Christian Anderson Children’s Hospital, … Read more
Ricky is an energetic, larger than life 8-year-old who loves Boy Scouts, Minecraft, gaming, building, music, and most importantly, being a big brother to his brother Michael. He is the most empathetic person you will ever meet, constantly trying to help and put a smile on your face, especially when he realizes you could use … Read more
Whitney, one of our HIGR Ambassadors, shares with us the following story. “If you had asked me 10 years ago what a rare disease was, I wouldn’t have had an answer for you. My youngest, Bohannon, was diagnosed in 2014 at 3 weeks of age with the diffuse form of congenital hyperinsulinism. She inherited 2 … Read more