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2 July 12, 2020 | Ultragenyx Ryan was the first patient dosed in the Phase I clinical trial for MPS I in 1998. Dr. Emil Kakkis' bungalow lab at UCLA. Dr. Emil Kakkis, the Founder and President of Ultragenyx, with Mark, Jeanne and Ryan Dant dedicating a conference room in Ultragenyx's Novato headquarters in Ryan's name. The Road to Founding Ultragenyx R yan Dant was diagnosed with mucopolysaccharidosis type I (MPS I) when he was 3 years old. His parents, Mark and Jeanne, were told that Ryan had a life expectancy of 10 years and, during those years, they could expect to see Ryan's health gradually decline while pain gradually increased. There was also no cure for MPS I and, because MPS I was so rare, no compa- nies were pursuing development of a treatment. At the time, Dr. Emil Kakkis was one of the few researchers in the world who was studying MPS I. In his bungalow lab at UCLA, Dr. Kakkis was trying to develop a synthetic version of the enzyme that is missing in kids with MPS I. Dr. Kakkis knew that it would cost a lot of money to take the enzyme from the lab to clinical trials and, eventually, com- mercialization. With the odds against them, the Dants started raising money with the hope of one day using it to support development of a treatment for MPS I. Their efforts began with a bake sale and, over time, they raised over $1 million. After meeting Dr. Kak- kis and learning about his progress in developing a treatment for MPS I, the Dants decided to support his research with the funds they had raised. Ten children were treated in a Phase I clinical trial, and all showed improvement after receiving the enzyme Dr. Kakkis developed; the enzyme received approval from the U.S. Food and Drug Administra- tion in 2003! Ryan is the longest-treated person in the world taking the enzyme Dr. Kakkis developed and has lived well past the age of 10. He graduated from college in 2017 with a Bachelor's degree in Sports Administration. Dr. Kakkis went on to found the Every- Life Foundation for Rare Diseases in 2009 to work on policy issues and advocate for patients who have rare diseases. But, families kept calling him asking for help in developing treatments so he knew he had to do more. Dr. Kakkis founded Ultragenyx on April 22, 2010.