NBC News’ Peter Alexander and sister Rebecca Alexander raise awareness for Usher syndrome

Now to a personal story of adversity and strength that is close to our NBC family. Our Peter Alexander is using his platform to help his amazing sister Rebecca share her story and raise awareness about Usher Syndrome. Rebecca was diagnosed with a genetic disease when she was just 12 years old. It is the most common genetic cause of combined deafness and blindness. And while it comes with its share of challenges, Rebecca is not letting this disability stop her from living life to the fullest. Take a look. From the moment my sister Rebecca wakes up, there is not a minute to waste. Of course, no one knows what their future is going to look like. But for Rebecca, it's yet more uncertain. How do you live in that constant state of uncertainty? It's a fragile place to live. It's a humble place to live. It's there's tremendous vulnerability. Rebecca has a rare disorder called Usher syndrome, the leading genetic cause of deaf blindness. That means she's losing her vision and hearing. When your cochlear implants are off, you hear what? Nothing. Silence. The silence. And this is all she can see. Just 10° of vision, like looking through a straw, and it's shrinking. What do you see right now? I see my hands out here in this outermost periphery, and then I can't see them. I can't see them. I can't see them. I see them still. Rebecca is not defined by her disability. Instead of trying to overcome the adversity and fear, she's learned to embrace it. I allow myself to feel all of the loss, all of the grief, and it's only in allowing myself to feel the full range of my emotions that I'm able to feel all of the joy and all of the happiness and all of the sense of meaning that comes with everything. That being alive is. Hi everyone. Rebecca's ambitious and playful, a burst of energy with an enormous heart. She's a psychotherapist, published author, motivational speaker and a world traveller. Climbing Kilimanjaro, running with the Olympic torch, doing the Pacific Coast AIDS ride, and swimming from Alcatraz, an extreme athlete who works out six times a week. I can't control the fact that I'm going deaf and blind, but I can control how I take care of my body. Rebecca's become a disability rights advocate, First narrating APBS documentary on Helen Keller. She was such a trailblazer and more recently introducing to what's called Pro Tactile, a language created by the deaf blind community based solely on touch. Today I will be learning a whole new language. All the people I will be interviewing are deaf. Blind. It's a novel language, but incredibly sophisticated. So if I'm signing, I want you to be able to feel what my hands are doing. Rebecca's still learning. She put her hand to my face to let me know a smile. So went like that and a smile. Yeah, I love that. Yeah, I love you. Her latest accomplishment, the culmination of a two year effort to draw attention to the disorder. Working with the Usher Syndrome Society, a larger than life campaign featuring Rebecca called Every Second Counts. I have Usher syndrome, a rare condition that's causing me to lose all of my vision and hearing any second. Here we go, here we go, Here we go. Recently premiering on some of New York City's giant screens. A Times Square Takeover. What do you think? Oh my gosh. Amazing. How do you even describe that experience of seeing it up there? I think that when you grow up and you don't have role models, you could be able to become a role model for people that you needed. It almost feels like you're healing like your inner child. That is unbelievable. I'm so proud of you. I can't believe we did it. You do it. It's OK. Congratulations. I love you. That's so amazing. Oh, too sweet. Rebecca and Peter join us live now. Thank you both for being here and coming to the studio. It's so great to see you, so great to meet you, Rebecca. It's so incredible to hear you talk in that story about overcoming the fear of what is to come and just kind of embracing it, living life to the fullest. I think there's a lot we can all learn from that. How did you do that? What was that journey like to get to that place? Well, it's interesting because, you know, we talk a lot about overcoming challenges and overcoming adversity. And I actually don't feel like I've overcome anything. I feel like I've actually just been living through it. I've gone through it. And it's only in going through all of these challenges head on that I've been able to get to this place of, you know, just experiencing life in the present, in the moment and being so grateful for everything that I can do instead of focusing on what I can. That is a message that we can all take. I want to be clear, Peter is a friend and mentor to so many people. Off camera is the kindest person who's just always, always, always giving to people. So it's no surprise that his sister is at the top of the list. But Peter, just talk about why this is so important to you. Well, I mean, we tell stories for living, right? But it's a lot tougher when you're telling the story that matters to you more than any other. And that's sharing Rebecca's story. I mean, there's nothing I'm more proud of than the moments when she's talking to my daughters, 10 and eight, Ava and Emma, by FaceTime, teaching them sign remotely. When she stays over at our house overnight and wakes up in the morning with her cochlear implants off when they're off, she says, it's like heaven, 'cause I can't hear. I can't hear any of the noise in the house. But when the girls come down and try to put the cochlear on her ear, on her head and try to find where the magnet is, to have it catch. But she just to have her as a mentor, as someone to look up to. For my daughters in our family, I'm the guy on TV. But she is our star, right? It it is just something I couldn't be more proud of. And and I learn from her every day. When you think about the things that you're complaining about, you just pause and think hey, what? What can I be grateful for? How can I accentuate those things? And that's how Rebecca lives. Oh, God, it's such a good take away from this. Let's talk about this campaign. Every second counts. Getting its huge debut in Times Square. That's so neat. Tell us what you hope comes from this campaign. Yeah, so the Every Second Counts campaign has. It means so much to all of us in this community. First of all, we are a rare disease. We're an orphan disease. So being able to raise awareness is so much more challenging for us because we're a smaller community. And yet we have so many more people out there who have not yet been diagnosed or don't even know that we're out here to support them and to, you know, really be able to bring everyone together. But so the Every Second Counts campaign is I'm 45. I was told when I was 12 that in 10 years there would be treatment. And then 10 years from then I was told there would be treatment and there still is not treatment. And so I am so deeply hopeful that there will be treatment to be able to stop the further progression of my vision loss. And yet I also know that having this condition has brought the most amount of fulfillment and meaning to my life. And that coexistence of being deeply saddened by losing two of my vital senses and yet having so much fulfillment and joy and ability to be grateful for that coexistence of all of those things all at once is what it means to be human and what it means to live with Usher syndrome. So, Peter, I've just learned a lot here in the last three minutes. What have you learned most from Rebecca? I mean everything that she just said. One of the mantras that Rebecca taught us and has taught a lot of others was breathe in peace, breathe out fear, you know, and and it's just this idea, right? I think more compelling than anything is that it's not about overcoming. It's living with these things, right? It is We. We expect to have anxieties and fears. And you have to find a way to live with them, not to cope with them, but to live with them. They are part of your being and who you are. And it's a part of what makes all of us who we are. And then I think the most important thing she has taught beyond that is that be kind. You look around down when you're walking down the street, you look at Rebecca. You'd have no idea she's losing her vision and her hearing would be blind and deaf, right? You have no idea what other people are carrying around with them each day. So to use her as a reminder to be kind to others and frankly to yourself, I think would make us all a lot better off. Breathe in peace. Breathe out fear. That is really good. That is awesome. Peter and Rebecca thank you both for sharing your story as you are doing. You are. There are a lot of people who are seeing this, watching this, hearing about this and saying my goodness, I am inspired and I can take away so much from this. Thank you. Thank you guys so much.