An HI diagnosis is almost always unexpected and support from those who have been living with HI for years can be very helpful. Luckily there is a wonderful group of individuals with HI and parents who have children with HI who are happy to share their experiences and support others.
To help parents and individuals with HI seeking support, CHI connects experienced HI parents and adults with HI to those seeking connection. These mentors have the capacity and experience to provide support and valuable information. They are:
Maureen Bakker – The Netherlands: Maureen has a teenage daughter with hyperinsulinism. Her family traveled to the United Kingdom for part of her daughter’s care. Maureen is also the leader of the Dutch patient advocacy organization, CHI The Netherlands. Maureen can be reached by email at to_maureen@hotmail.com
Kiersten Cocuzza – USA: Kiersten’s son, Asher, was born with severe diffuse disease. He had a 98% pancreatectomy and has been managed by continuous dextrose, Octreotide, and Lanreotide. He has since graduated from all medication and solely uses a CGM for monitoring. He is managed by diet and being followed for diabetic transition. Kiersten and Asher live in New Jersey close to Children’s Hospital of Philadelphia (CHOP), a CHI Center of Excellence (COE)! She can be reached at KL.Cocuzza@gmail.com
Randy Hart – USA: Randy has two adult daughters born with HI/HA, and Randy’s husband was diagnosed with HI as a baby. Randy can be reached by email at rahart@comcast.net.
Anna Nicolaou – United Kingdom: Anna is a young adult living with hyperinsulinism from the United Kingdom and Cyprus. She is a member of our Collaborative Research Network and is an incredible advocate for young people with HI. Anna can be reached by email at annanicolaou63@gmail.com.
Kimberley Pfaff – USA: Kimberley’s son, Ricky, was born with an unknown genetic cause of Congenital Hyperinsulinism and is being treated with diazoxide. For the last eight years, Kimberley has been diving more into the neuro cognitive issues that complicate Ricky’s day to day life. They live in Philadelphia, and frequently visit CHOP to see Ricky’s care team and fellow HI patients and parents. Kimberley’s email is pfaffette@gmail.com
Julie Raskin – USA: Julie is an HI mom to an adult son born with HI due to mutations in the ppotassium/K-ATP channel. He now has post-pancreatectomy diabetes. Julie can be reached at jraskin@congenitalhi.org.
Pam Williams – USA: Pam Williams has an adult son born with GK HI. Her son is now a father and lives with post-pancreatectomy diabetes. Pam can be reached by email at j.o.williams@juno.com.
For any further questions, we encourage you to reach out to CHI at info@congenitalhi.org.
