nspiring Patient Voices Series! Heart Patients will be sharing their real-life stories. Brought to you by Heart of a Giant Foundation (HGF), in collaboration with BZERO9.ONLINE. See heartofagiant.net/blog for more details.
Hi Friends: you are invited to our next Zoom meeting. February 18th, 2021, 02:00 PM Eastern Time.
In this episode: We have Wendy Coe Borsari (@wecobo66) will share her journey with us and her work to bring education to patients and the patient voice to research.
We are bringing you a series of unfiltered conversations with inspiring voices who would talk about their unique stories and share their commitment to heart health and how they commemorate resilience in the face of adversity.
Wendy was diagnosed with Hypertrophic Cardiomyopathy (HCM) at the age of 24, but she will tell you that she has lived with HCM her entire life. Wendy’s mother also had HCM, as did several of her uncles and cousins. There is a long history of her family’s genetic condition, which has led to 7 heart transplants and several incidences of sudden cardiac arrest. Wendy has two children who are also affected by the condition. Her son was diagnosed at 15, and her daughter was diagnosed at birth.
When Wendy’s children received their diagnosis, Wendy became involved in advocacy and education around HCM and other genetic cardiomyopathies. Today, Wendy consults with both large and small pharmaceutical companies to incorporate the patient voice in the work they do and the clinical trials they run. Wendy also works with the Sarcomeric Human Cardiomyopathy Registry (SHaRe). She educates people about genetic cardiomyopathy through a website www.theshareregistry.org , and her “Affairs of the Heart” patient conferences are held around the United States.
Note: This meeting will be recorded (showing the speakers). Highlights and Q&A will be shared with the public at a later stage. For sharing on social media, please tag us and use the hashtags #heartofagiant #amplyfingpatientvoices #patienteducation #hearthealthresearch
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