As a parent of a young man affected by Barth syndrome, I am honored to know Professor Steward and to have worked alongside him in our fight to help families with this rare disease. It seemed fitting to nominate him for this special award and I am thrilled that, from the hundreds of nominations this year, he has been chosen as a 2017 honoree.
Prof. Steward will attend the 2017 RARE Patient Advocacy Summit and RARE Tribute to Champions of Hope series of events being held on September 14 through September 16, 2017 in Irvine, California, where he will take part in the RARE Champion of Hope Award ceremony as well as the Tribute on Saturday, September 16, 2017.
Prof. Steward has dedicated a huge part of his life to helping families with Barth syndrome lead better quality lives, looking further than medicine to see the whole person and to put the person at the center of his medical care. He is known, respected, and admired by so many within our international community.
He is a powerful voice for our rare condition, providing better medical care today with the hope of a successful treatment for the future.
He created the first center of excellence for Barth syndrome in Bristol, UK, a service funded by the National Health Service (NHS) in 2010. Working with people affected by Barth syndrome and their families, Professor Steward crafted a service which includes diagnosis, genetics, cardiology, metabolics, hematology, neurology, physical therapy, occupational therapy, psychology, and specialist nurses. At the core of this service are the patient and their family. People from all over the United Kingdom and Europe can access this service and receive expert multi-disciplinary, patient-centered care.
He is a senior member of the international Scientific and Medical Advisory Board of the Barth Syndrome Foundation, the patient advocacy group devoted to serving the needs of this rare disease community.
He is currently pursuing an exciting clinical trial of a drug therapy for Barth syndrome in the United Kingdom, the CARDIOMAN trial. His work in creating this clinical trial provides a sense of hope to families as he continues to search for ways to improve the lives of those affected by Barth syndrome.
He has co-authored five publications about Barth syndrome, including a pivotal review of this disease.
He acts as an ambassador for the disease, speaking at many scientific and medical conferences around the world.
He treats every family with respect and breaks down traditional barriers by actively listening to and learning from the families. This has helped make him an informed and caring physician who is a true champion for affected individuals and their families.
Prof. Steward, thank you for all that you do for our international rare disease community. We hope you have an inspirational and enjoyable time at the events and on the blue carpet in Irvine, California.
For more information about the 2017 Champion of Hope Honorees and Global Genes, please click here.