In September, neighbors had a chance to learn more about Usher Syndrome at a happy-hour interview at TPC Potomac at Avenel Farm. Avenel resident Lori Leasure, a local realtor, organized the event held September 20th, featuring a conversation between two individuals who live with Usher Syndrome: author Rebecca Alexander, who lives in New York, and former Paralympic athlete Becca Myers, who is from Bethesda.

Usher Syndrome is the leading cause of combination deaf-blindness. The Usher Syndrome Society was established in 2012 to raise awareness about this condition and raise funds for research to find a cure.

Lori first learned about Usher Syndrome just before the pandemic, when her daughter Allison, who was working in the deaf community as a speech therapist, recommended Rebecca Alexander’s memoir “Not Fade Away.” Lori found the book engaging and inspiring and reached out to Alexander to learn what she could do to offer support and help more people in the community learn about Usher Syndrome. They scheduled a fundraiser event for May 2020, but unfortunately that had to be cancelled because of Covid precautions. Lori persisted in communicating with the Usher Syndrome Society, and they were able to reschedule. In 2022 and 2023, Lori organized exercise programs run by Alexander, an extreme athlete, activist, and psychotherapist who has Usher Syndrome.

This year's event at TPC featured Rebecca Alexander interviewing Becca Meyers about her Paralympic career and her experiences living with Usher Syndrome. About 80 people came to the happy-hour event to learn about the Usher Syndrome Society, and the event raised just shy of $10,000 for advocacy and research.

Becca Meyers is an ESPY Award Winner and has multiple world records and Paralympic gold medals. She was a member of the 2012 and 2016 US Paralympic teams but had to withdraw from the 2021 Paralympics because Covid restrictions limited who could travel with her. After that, she chose to end her swimming career. Her coach, Bruce Gimmel, also coached Maryland Olympian Katie Ledecky. 

All who came to the happy hour and interview learned something new about Usher Syndrome. In discussion after the event, many people expressed how inspired they felt after hearing Rebecca Alexander and Becca Meyers’s stories about how much they have accomplished. Both are serious athletes who have succeeded and built a strong community who supports them. Despite being completely deaf and having 10% of their remaining vision, these two women, like many others with Usher Syndrome, have persevered in meeting their own goals and found ways to encourage others.

The Usher Syndrome Society continues to research therapies and treatments that may slow the progression of Usher Syndrome. There are three types of Usher Syndrome, with varying onsets of loss of sight and vision. Becca Meyers was born deaf and has lost her range of vision over time, while Rebecca Alexander’s hearing and vision loss have both been progressive. People living with Usher Syndrome are aware of how their vision or hearing are changing, so they make every experience count. “It’s a race against the clock,” Lori explains. Current research looks encouraging, and they hope that they will soon be able to slow down the Retinitis Pigmentosa (vision) portion of Usher Syndrome.

To support the Usher Syndrome Society, follow them on Instagram @ushsociety or online at www.ushersyndromesociety.org. For more information about Lori’s next local event, follow her Instagram @leasureteam.