#37 Congenital Hyperinsulinism with Advocate Julie Raskin
In this enlightening episode, we are joined by Julie Raskin, Chief Executive Officer of Congenital Hyperinsulinism International (CHI). Julie's journey began when her son Ben was born with congenital hyperinsulinism (HI), a condition that causes the overproduction of insulin leading to severe hypoglycemia. Determined to improve Ben’s life and the lives of others affected by HI, Julie co-founded CHI in 2005.
Discussion Topics:
Julie shares her son Ben’s story, his diagnosis with HI, and the journey that led to the formation of CHI.
Symptoms of congenital hyperinsulinism (HI) and the challenges in diagnosing this rare condition.
Genetic factors and inheritance patterns associated with HI, including the probability of siblings being affected.
The impact of HI on Ben's childhood and current life.
Julie’s experiences and insights on managing HI and supporting a child with the condition.
The story behind the founding of CHI and its mission to improve the lives of babies born with HI worldwide.
Key challenges faced by families with HI diagnoses and how CHI provides support.
CHI’s Key Initiatives including the The HI Global Registry which documents the natural history of HI with over 559 participants from 53 countries.
The HI Centers of Excellence designation program: Encouraging the highest standards of care for babies and children with HI.
CHI’s efforts in securing funding for research grants, supporting patients with emergency funds, and medication donations.
Collaboration with expert clinicians, researchers, and biotech professionals to advance HI research and treatment.
Insights from the virtual support group hosted by CHI, with over 2,300 family members participating.
Importance of patient advocacy in rare disease research and healthcare policies, and CHI's role in this area.
Julie’s advice for families dealing with HI or other rare diseases based on her personal experiences.
Ways individuals and organizations can contribute to CHI’s mission and support HI-affected families.
The future of HI research and treatment, and CHI’s role in shaping this future.
Learn more about Congenital Hyperinsulinism International (CHI) and how you can get involved: at congenitalHI.org
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