The founder of 123Genetix, Dr. Wayne Danter, explains why he started a social enterprise focused on empowering rare disease research:
My personal journey into rare diseases research began during previous research into p53, its role as a critical tumor suppressor in most cancers, and specifically its role in a rare germ cell disorder known as Li-Fraumeni Syndrome (LFS). Most people with LFS develop benign and malignant tumors in childhood and the risk continues to increase with age. Unfortunately, the tumors are difficult to treat, tend to recur and often shorten the lives of those affected.
About two years ago I had the good fortune to be invited to a rare diseases conference in California sponsored by the Global Genes organization. It was an impressive event with both heartwarming and tragic stories about individuals, families and loved ones living with rare diseases. I was struck by the strength and courage of all those involved, often in the face of severely limited resources and lack of a basic understanding of the disease process.
The obvious global unmet medical need plus my experience in medicine, pharmacology and systems biology lead directly to the creation of 123Genetix, a new social enterprise for empowering rare disease researchers.
It is the goal of 123Genetix to provide advanced computer simulations of many rare diseases, free of charge to not-for-profit researchers. These advanced models should empower researchers and lead to research that otherwise might not be possible.
To be able to provide our computer models to not-for-profit researchers free of charge, we are raising funds on Indiegogo. We ask anyone that is interested to please consider making a donation.
About our blog
We intend to use this space to help you get to know 123Genetix, our team and our mission, as well as to create more awareness for rare diseases and the limitations their researchers face.