Cath Jayasuriya

Background

About Cath Jayasuriya

Cath Jayasuriya founded Coalition Duchenne in 2011 with her son, Dusty Brandom. After Dusty was diagnosed with Duchenne muscular dystrophy at the age of 5 in 1998, she knew that she had to dedicate herself to raising awareness and funding research for curing the disease. Cath's roots are Malaysian-English. She and her family have been involved in the world of Duchenne for over 26 years. She has actively sponsored groundbreaking research in the field of Duchenne. Cath has collaborated with Dr. Eduardo Marban at Cedars Sinai Medical Center in Los Angeles, pioneering the use of cardiac stem cells and exosomes to address scarring in Duchenne hearts —a significant endeavor that gained recognition on NBC news. The research has been commercialized by Capricor therapeutics who are seeking approval of deramiocel (CAP-1002). She has also worked alongside Professor Steve Wilton at the University of Western Australia on early research including oligonucleotides. This research led to the first FDA approved treatment for Duchenne through Sarepta Therapeutics. Cath has also lobbied extensively on Capitol Hill to secure funding for Duchenne research and care. Recently, Coalition Duchenne and Duchenne Without Borders launched an outreach project, distributing AMBU-bags and other essential medical equipment to boys with Duchenne in rural areas worldwide. She has also had the privilege of giving talks in Singapore and Hong Kong, advocating for increased access to Duchenne trials in Asia. Cath climbs Mt. Kinabalu in Borneo every single year to raise awareness for Duchenne. Over the last 14 years, Expedition Mt Kinabalu has brought together over 700 international climbers to raise awareness, including wingsuit pilots and legendary mountaineers. In 2012, she directed the multi award-winning documentary, “Dusty’s Trail: Summit of Borneo,” which is available to stream on Amazon Prime Video. In addition to her advocacy and research efforts, Cath has undertaken extensive coursework on grief with renowned expert David Kessler. She is currently a grief moderator for David Kessler. She has lead support groups focusing on Duchenne and grief-related issues, providing a supportive community for those facing similar challenges. Cath is a certified yoga instructor, life-coach, plant-based nutritionist, grief educator, author of Navigating Through Life, and a singer-songwriter with music streaming on Spotify. She does all of this while also caring full time for Dusty, now age 32.