Affecting people in many devastating ways, Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that cause such symptoms as weak joints, gastrointestinal (GI) problems, heart-related issues, fragile skin, chronic pain and fainting. Making matters worse, EDS is often misdiagnosed due to its wide range of symptoms, leading to patients getting lost in the medical system.
Mark Feldman and Alix Hoy have UHNITED with some of the top EDS researchers in the country to change that.
This year, Mark and Alix donated $2 million towards the establishment of the GoodHope Ehlers-Danlos Syndrome Chair in Translational Medicine. This gift is the latest in a history of giving to UHN that dates back more than 20 years, and a passion for better understanding and treating EDS that was the catalyst for launching the GoodHope EDS Clinic at UHN in 2017 – the first-of-its-kind in Canada.
Dr. Hance Clarke
Thanks to Alix and Mark’s generosity, in September 2023, UHN and the University of Toronto (U of T) were thrilled to announce the appointment of Dr. Hance Clarke as the inaugural GoodHope Ehlers-Danlos Syndrome Chair in Translational Medicine.
Dr. Clarke is both Director of the GoodHope EDS Clinic and Director of Pain Services and the Pain Research Unit at Toronto General Hospital. He is also the Knowledge Translation Chair for the University of Toronto Centre for the Study of Pain, and an Associate Professor in the Department of Anesthesiology and Pain Medicine at the university.
“I am excited and honored by this role and am grateful for the generosity of Alix Hoy and Mark Feldman, who made this Chair possible,” says Dr. Clarke. “The Chair will offer stable and sustained support that is of tremendous value, and marks a significant step forward for patient care at the GoodHope EDS Clinic at UHN.”
An interdisciplinary model of care
Since its inception, the GoodHope EDS Clinic at UHN has used an interdisciplinary model to address gaps in the diagnosis and treatment of EDS and associated ailments, including hypermobility spectrum disorders (HSD).
Along with specialized patient self-management programs, the clinic works with experts from various fields including rehabilitation medicine, GI, neurology, rheumatology, anesthesiology, cardiology, and genetics. Expanding on this model, efforts are focused on building a cross-disciplinary, integrative care pathway that will expedite treatment further.
Global collaboration
Further improving patient treatment, the GoodHope Ehlers-Danlos Syndrome Chair in Translational Medicine is giving Dr. Clarke and his team vital support in advancing clinical and basic science research for EDS, HSD and other connective tissue disorders.
“We are delighted to contribute to the understanding and treatment of EDS at UHN,” says Mark Feldman. “With Dr. Clarke as Chairholder, we are more optimistic then ever about the future of the GoodHope EDS Clinic’s leading-edge research, and the impact that work at the Clinic will have on patient care around the globe.”
