Brian McDade, born with Myocarditis Cardiomyopathy, had faced lifelong struggles with weight gain, muscle building, and stamina increase. Despite efforts to improve through exercise, he found himself consistently winded and unable to make progress. These challenges often left him feeling isolated, especially as he observed other cardiac patients, including his father, thriving physically.
In November of 2023, Owen Enroughty, the son of Brian's cousin Amy, was born in Virginia, displaying symptoms similar to Brian's own experiences. Given the family history of loss related to Barth syndrome, Brian underwent testing in February and received a positive diagnosis in March from his geneticist at UMMC.
While initially daunting, this diagnosis provided Brian with a sense of relief and clarity, explaining the struggles he had faced with muscle development and stamina. He became involved with the Barth Syndrome Foundation (BSF), finding support and community within the organization. Brian eagerly anticipated attending the International Barth Conference later in the year.
Recognizing the financial challenges some families faced in attending the conference, Brian initiated fundraising efforts for Barth Syndrome Foundation's Family Services Fund. This fund aims to help families cover the costs of attending the conference, which serves as a gathering for both scientific experts and the small global community affected by Barth syndrome.
For those interested in learning more about Brian's journey, an article by his local genetics group detailed his story, you can read it here.
Brian expressed gratitude for any consideration given to supporting the Barth Syndrome Foundation and its mission.
