I am so sad to share the news that Jim Nestor died last week, on September 10, 2025. His death is a huge loss, first and foremost for his family, and all his loved ones, but also for the congenital hyperinsulinism (HI) family community. It is like yesterday that I got a phone call from Jim about setting up a way for HI families to communicate. It turned out we both had toddler-aged children and Dr. Stanley thought we should connect, along with one other family, about the creation of a new resource.
Jim asked me if I would join an email listserve called “Hyperins.” Of course I said yes, and the rest is history. More details on this magnificent service that Jim set up in a blog I wrote in 2019 celebrating the 20th anniversary of its creation: The 20th Anniversary of the Hyperins Yahoo Group – Congenital Hyperinsulinism International. I got to meet Jim in person, along with his family, in 2003 at the first Congenital Hyperinsulinism Family Conference, held at the Sheraton University Hotel with experts from the Children’s Hospital of Philadelphia.
It turns out Jim was a real pioneer in rare disease patient support. That Hyperins listserve has now blossomed into a movement of families affected by HI contributing to scientific breakthroughs in care and diagnosis, as well as support, through the organization Congenital Hyperinsulinism International (CHI). Not only did Jim set up that first listserve, he managed it for about 20 years, and he was a founding member of the CHI Board of Trustees. On the CHI board his focus was on developing CHI’s digital communications.
In 2016, Jim was the recipient of the Be My Sugar Patient Advocacy Award. It was an honor for me to present Jim with this award at the 2016 Sugar Soiree in Boston (see image below right). For so many years, the online community he started, Hyperins, was the only source of patient-created information. Our thoughts are with Jim’s family and loved one at this time of great loss and sorrow. His obituary can be found here: Breslin Funeral Home, Malden, MA – Obituaries.
