Usher Syndrome Society hosting a free educational event to share the lived experience of going both deaf and blind from Usher syndrome (USH)

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Dec 05, 2022, 08:01 ET

Steven McCoy, the first recognized black deafblind journalist in the US, and Rebecca Alexander, an award-winning author and psychotherapist who is almost completely blind and deaf will take the stage with moderator and esteemed media personality, Danita Chantel to talk about the unique experience of living with Usher syndrome, a rare genetic disease that causes progressive loss of both vision and hearing. Rebecca and Steven will address a range of topics including how to cultivate a deeply meaningful life in the face of adversity, using vulnerability as a tool for empowerment, finding comfort with discomfort, grief and loss, intersectionality, self-advocacy, and beyond.

BOSTON , Dec. 5, 2022 /PRNewswire/ -- The Usher Syndrome Society will host a free public event called This Is USH, an evening of conversation from 5:00 pm -7:00 pm at the Joseph B. Martin Conference Center at Harvard Medical School. This event is open to researchers, students, physicians, biotech and industry professionals, members of the USH community, and all interested persons to learn more about what it means to go both deaf and blind.

The Usher Syndrome Society is a non-profit organization that uses storytelling and educational events to raise awareness and funds for treatments and a cure for Usher syndrome. USH is a progressive genetic condition affecting the retina and inner ear, leading to combined vision and hearing loss, and often balance issues in approximately 400,000 people worldwide. Currently, only 1% of the Usher syndrome population has been identified.

Steven McCoy is an American entrepreneur, journalist, talk show host, philanthropist, and author. He is the founder of Spoken Entertainment, a YouTube Broadcast Channel, and Sessions with Steven. Steven is on a mission to change the stigma that surrounds people who are blind and/or deaf and who also identifies with the LGBTQ+ and Black communities.

Rebecca Alexander is an author, psychotherapist, disability rights advocate, and extreme athlete who is almost completely blind and deaf. Rebecca was the narrator for the PBS American Master's biopic documentary "Becoming Helen Keller", has been featured on many TV shows and major publications, presented for TEDx, and the recipient of numerous prestigious awards. Rebecca's critically acclaimed memoir is in development to become a major motion picture.

Contact:
Nancy Corderman, President & Founder
[email protected]

SOURCE Usher Syndrome Society