Press Play to See the Many Faces of CHOPS Syndrome
Our Story
CHOPS Syndrome Global began with three kids and two amazing genetic doctors in search of answers to a genetic anomaly. In 2015, Dr Ian Krantz and Dr Kozuke Izumi discovered that Leta, Liam and Nadira all shared a rare "de novo" mutation on the Aff4 gene of Chromosome 5. That day, we became a family and since then our family has grown worldwide. Our organization is comprised of families from Australia to Israel who are all struggling to raise their kids affected by CHOPS Syndrome. But collectively we are advocating for treatments and answers to what causes this very rare genetic syndrome. Our hope is to find treatments to improve the quality of our kids lives, but also to someday find a cure.. As parents of CHOPS kids, we understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. That’s the reason CHOPS Syndrome Global was born – to connect, empower and inspire our small but mighty community.
Our Vision
We envision a globally connected community so that families newly diagnosed will not feel so alone. We are here to connect, empower and inspire your family and hopefully work together to someday discover a cure for CHOPS.
We also hope to be a resource to help families find doctors and researchers that are working on treatments and answers for our CHOPS kids.
We are here to help you advocate for your child's best quality of life and we are your global support system for whatever else you need to become effective advocates on your own behalf.
Our Future
In collaboration with our Italian sister organization Fondazione CHOPS Mallatie Rare https://fondazionechopsets.com/en, we are raising money, building a scientific board of directors and moving research forward for CHOPS Syndrome treatments. Our team is united by our determination to support the CHOPS Syndrome community and provide what patients and advocates need to someday find a cure.
CHOPS Syndrome Global began with three kids and two amazing genetic doctors in search of answers to a genetic anomaly. In 2015, Dr Ian Krantz and Dr Kozuke Izumi discovered that Leta, Liam and Nadira all shared a rare "de novo" mutation on the Aff4 gene of Chromosome 5. That day, we became a family and since then our family has grown worldwide. Our organization is comprised of families from Australia to Israel who are all struggling to raise their kids affected by CHOPS Syndrome. But collectively we are advocating for treatments and answers to what causes this very rare genetic syndrome. Our hope is to find treatments to improve the quality of our kids lives, but also to someday find a cure.. As parents of CHOPS kids, we understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. That’s the reason CHOPS Syndrome Global was born – to connect, empower and inspire our small but mighty community.
Our Vision
We envision a globally connected community so that families newly diagnosed will not feel so alone. We are here to connect, empower and inspire your family and hopefully work together to someday discover a cure for CHOPS.
We also hope to be a resource to help families find doctors and researchers that are working on treatments and answers for our CHOPS kids.
We are here to help you advocate for your child's best quality of life and we are your global support system for whatever else you need to become effective advocates on your own behalf.
Our Future
In collaboration with our Italian sister organization Fondazione CHOPS Mallatie Rare https://fondazionechopsets.com/en, we are raising money, building a scientific board of directors and moving research forward for CHOPS Syndrome treatments. Our team is united by our determination to support the CHOPS Syndrome community and provide what patients and advocates need to someday find a cure.
