Angela Calderon Pio’s world turned upside down when her sister, Alina, was born in January 2017. As a child approaching her preteens, she was ecstatic to welcome a younger sister – a built-in best friend to dress up, play with, and love more than she could imagine. But Alina’s early days, months, and even years did not go as planned. Alina was born with congenital hyperinsulinism (HI), a rare disease that occurs in roughly 1 in 28,000 births, causing the pancreas to overproduce insulin, resulting in dangerously low blood sugar levels. Low blood sugar, or hypoglycemia, can lead to many complications, including irreversible brain damage or even death.
As a proud but scared big sister behind the scenes, Angela witnessed her mother, Marbella, struggle to get Alina the care she needed. But through this, she also saw her mother find hope. Marbella eventually connected with Julie Raskin, CHI’s co-founder and CEO, who herself had given birth decades earlier to a son with HI; he is now thriving. CHI provided the family with the knowledge, resources, and referrals they needed to see Alina thrive. And all the while, Angela took this in. The family’s experiences would inspire her own path.
In the fall of 2024, Angela made a bold leap, leaving her childhood home in California to begin her studies across the country at Harvard University. Seeking ways to make her mark in the community, she enrolled in a philanthropy course, where she gained extensive knowledge about nonprofit administration. Angela continued to nurture this desire to give back by working with The Philanthropy Lab, a nonprofit she learned about at Harvard; eventually, she became a member of the lab’s grant-writing board. In this next step of involvement with the lab, Angela chose CHI as an organization whose values she believes in, and she has been working as an intern assisting us in submitting grant applications for funding to support our life-saving work. In Angela’s words, “selecting CHI felt like a natural answer … I could help people like my sister receive the care and the network that they deserve.”
Angela knows that for rare disease-focused nonprofits like CHI, grants and fundraising have a unique ability to change the lives of so many patients who often encounter great challenges. CHI’s programs – including our Centers of Excellence, which designates hospitals with multidisciplinary teams with medical expertise in HI; our extensive research and awareness projects; family conferences; and more – directly benefit the patient community.
When she attended our family conference held with the Children’s Hospital of Philadelphia in October 2025, Angela was struck by how many families shared her family’s experience of never having heard of HI before their loved one’s diagnosis, and by the value of meeting with families like hers, face-to-face. Her family’s understanding of HI from CHI conferences and materials, and their ability to explain the disease to others, have been instrumental in Alina’s capacity to thrive.
In Angela’s own words, here’s what drives her to support CHI through working on grant-writing and fundraising: “I firmly believe that for rare disease nonprofits like CHI, receiving grants and funding is just so important. When you first find out about a rare disease like hyperinsulinism, it strikes you that you didn’t really know about it before. And that can only be fixed with awareness campaigns and educational materials. The networks, the advocacy, the awareness campaigns … they cannot be done without these funds. And that’s why I decided to contribute through writing these grants. I firmly believe that all of these resources are so important to families like mine – and without them, we would be living in a much more isolated world. Grant writing is my way of contributing to our hyperinsulinism families; it’s my way of giving back and supporting people like my sister.”
Angela is currently interning at CHI through this spring with our Development Director, Pamela Weber-Leaf. Please feel free to reach out to Pam and Angela if you have ideas about grants, family or large foundations or other opportunities that could support CHI’s critical mission to improve the lives of those impacted by HI. They would be thrilled to connect with you via Pam’s email – pweberleaf@congenitalhi.org.
