Lauren Edwards, USA: “Gaucher has no single face, and our global community is stronger when we learn from one another.” When I was invited to attend the 2023 Go with Gaucher Symposium in Istanbul, Türkiye (Turkey), I was honoured, but I had no idea just how much the experience would mean to me. I arrived Continue Reading »
Bailey has type 3 Gaucher disease. She was diagnosed when she was nine months old and despite the hardship Gaucher has had on her and her family’s lives, she is always smiling. And what a beautiful smile she has! Please watch Bailey’s video below, read the articles, and share them with everyone you know. Love Continue Reading »
I was diagnosed with type 1 Gaucher Disease at the age of 20, one month before my senior year at Penn State University. I was fortunate to be referred to a specialist immediately and to begin treatment, which consisted of biweekly infusions of enzyme replacement therapy. Unfortunately, because the disease had been unknowingly active long Continue Reading »
Hi! My name is Madelyn and I am a 23 year old with type 1 Gaucher disease. I got diagnosed when I was 5 years old and started receiving treatment soon after. I was extremely lucky to be diagnosed at such a young age and have access to medication as soon as I needed it Continue Reading »
I was diagnosed with Type 1 Gaucher Disease (GD) at age 18, right before I started college. I began enzyme replacement therapy immediately, receiving infusions every two weeks throughout all four years of my undergrad schooling. I kept quiet about the condition during those years. Finally, I decided to open up about my GD and Continue Reading »
Hi! My name is Julie and I am a mom of a beautiful, funny, sweet little girl with Gaucher Type 1. When I was pregnant, I found out during routine genetic testing that both myself and my husband were Gaucher disease carriers. We had Zoey tested a week after she was born and a month Continue Reading »
I am James Romano. I am the Legislative Coordinator for the Gaucher Community Alliance. I am working to improve healthcare access for Gaucher patients and other Lysosomal Storage Diseases. I started my career advocating for the Hemophilia Community because of a personal tie – I had three uncles and two cousins with Severe Hemophilia A. Continue Reading »
My name is Ilaina Davidson and I live in Los Angeles with my husband and two daughters, Rebecca (15) and Abby (13). Rebecca and Abby have Gaucher Disease Type I (diagnosed at birth) and have been on Enzyme Replacement Therapy (ERT) since they were 2 and 3 years old respectively. Our family’s Gaucher journey started Continue Reading »
Cyndi is a type 1 Gaucher patient. She was diagnosed in the mid 70s as an early teen, decades before treatment became available. Under the guidance of Dr. Roscoe Brady at the National Institutes of Health, Cyndi learned of early research for treatment and had hope that she would live a long, healthy life, contrary Continue Reading »
My diagnosis of Gaucher Disease at age 27 came as a shock and a relief. I was newly pregnant with our first child and my husband and I decided to have the Ashkenazi Jewish Panel for genetic tests done since we are both of Ashkenazi Jewish ancestry. I was sitting in my law office when Continue Reading »
