Shine A Light Exhibit: For 8 years the USH Society has curated an unparalleled global photographic collection, capturing the essence of the Usher syndrome community. These portraits, paired with poignant narratives, weave profound expressions of light and shadow that compel viewers to explore the lives behind the lens, stirring emotions and curiosity about what it is like to progressively lose both hearing and vision. The exhibit not only brings awareness but helps identify more people living with this rare disease.
Rebecca Alexander: As a renowned advocate for Usher syndrome, Rebecca Alexander brings her personal triumphs and challenges to the campaign. An award-winning author, psychotherapist, keynote speaker, disability rights advocate, and extreme athlete, Rebecca’s journey with Usher syndrome adds an intimate and authentic narrative that educates and brings hope.
Campaign Highlights:
● Times Square Billboard Takeover: A poignant display of empowerment, featuring the “Shine A Light” exhibit alongside inspiring visuals of Rebecca Alexander.
● Media Engagement: A comprehensive media strategy spanning across multiple media channels and partners, featuring a dynamic 30-second commercial.
● Community Engagement: Storytelling and educational initiatives aimed at enhancing public understanding and support for those living with Usher syndrome.
About The Usher Syndrome Society: The Usher Syndrome Society (USH Society) is a non-profit organization that utilizes storytelling through the arts, educational events, and collaboration to raise awareness and research funds to find treatments and a cure for Usher syndrome. Through a robust network of researchers and an esteemed Scientific Advisory Board, the Usher Syndrome Society is making critical scientific strides.
Join Us: Be part of a movement that shines a light on Usher Syndrome, advocating for awareness, support, and research. Together, we can make every second count.
Anticipating the Event: The Usher Syndrome Society looks forward to welcoming supporters, media personnel, and the public to this transformative event that not only shares the urgency of the present but also ignites hope for the future.
Editorial Opportunity Manhattan & National: Spend a day in the shoes of Rebecca Alexander who has Usher Syndrome and wears Cochlear™ Implants. As she is low-sighted, at times she uses a cane as she goes through a typical day which could include grocery shopping, taking a subway or bus, speaking engagements for her book, and her professional practice. Manhattan residents particularly are faced with navigating city streets as they are constantly under construction and scaffolding.
Editorial Opportunities in your area: We welcome media who would like to help tell our story and create more awareness for Usher Syndrome to consider speaking with someone who is living and thriving with USH. Every story is different and noteworthy. While the Usher Syndrome Society focuses on raising money to fund research and a cure those living with USH might have Cochlear™ hearing devices, a guide or service dog, use a cane, live in a big city or a small town, or be a student or a grandparent. We would welcome sharing some real-life profiles. Visit: www.UsherSyndromeSociety.org
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gail parenteau
publicist
+1 2125323934
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