Inside Rebecca Alexander’s Awareness Campaign for Usher Syndrome

Spotlight on Usher syndrome 👁️‍🗨️ Today, we're highlighting how those with Usher syndrome may experience the progression of their vision loss. Did you know there are three general categories of Usher syndrome? They are even further subdivided into types based on the mutated gene causing the disease! You can learn more about Usher syndrome on our website at: www.FightingBlindness.org/diseases/usher-syndrome Video Description: Text reading “Here’s How Usher Syndrome Progression May Look For Some

Today, on Rare Disease Day, we are honored to share a glimpse of the Mullarkey family’s story. In 2025, they were featured in our second national Every Second Counts commercial. During the making of that commercial, Rebecca Alexander sat down with Samantha and Alec Mullarkey to talk about their young son Michael’s unexpected diagnosis with Usher syndrome. Their story underscores why every second truly counts for families living with Usher syndrome and the importance of bringing awareness and tre

Usher syndrome is a condition that affects both hearing and vision, often leading to deafness from birth and gradual vision loss over time. It shapes how individuals experience and connect with the world. So we chose silence and learned sign language — to meet them where they are. During our last mission in Syria, AHR shared quiet moments, simple activities, and genuine human connection 💚 #usher #ahr #syria #humanity | Atlantic Humanitarian Relief

Usher syndrome impacts as many as 25,000 people in the United States and is the leading cause of combined deafness and blindness in the world. The vision loss is due to retinitis pigmentosa and is combined with hearing loss due to genetic mutations affecting both the retina and the cochlea, a sound-transmitting structure of the inner ear. Check out what playing a piano may look like from the perspective of someone with Usher syndrome. This animation shows symptoms ranging from moderate to profou

Man with Usher Syndrome shares story of hope