Hi, I'm Angela, and I live here in Houston, Texas, and I'm married to the most wonderful man, Justin. 

I've always been a person who just has a really independent spirit. And whether it means I'm going to be able to do something myself or if I'm gonna help to put the right people in place to help me accomplish that task, I'm just gonna figure it out. 

My doctor and I talked about the goals that I have for my life, and if Evrysdi would help me to potentially achieve those goals. And we talked about kind of the potential side effects that could take place, but also the things that could possibly happen after taking it. After that discussion, we made the choice that I would be taking Evrysdi. 

When I think of taking Evrysdi, it fits so perfectly with my "I can" attitude. I like to focus on the things that I can do, and so I can take Evrysdi every day. When I started with Evrysdi, I definitely wanted just to maintain where my current motor function is. I thought about how important my arm and hand function were to my daily living. It allowed me to brush my teeth and put on my own makeup. That's really important to me, because it's less caregiver time. I didn't want to get to a point where I needed to bring in more help or where my husband needed to assist me, 'cause we've built a life around the things that I'm able to do, and I wanted to maintain as much motor function as I can so that I could keep doing the things that are important to me. 

I've always been able to feed myself. I got into makeup when I was pretty little, so starting in about sixth grade I had my blue eyeshadow that I was able to do myself and can continue to do that as well, now that I'm in my forties. 

I'm really happy with my results on Evrysdi. Every time I go to the neurologist, I do a motor function test, and the last time I went, I actually went up a point, which I don't know if that means anything to you, but I was really excited. I was able to tear a piece of paper, and it was the best sound I'd ever heard, that I was able to do that. I was still able to move the jar of coins from one circle to the other, and I picked up the bag of bird seed, so it was exciting. Over the years, trips to neurologists can kind of be disheartening when you have SMA, because things aren't necessarily getting better. And so to score a point higher on a test and do a little bit better, it means everything. 

One thing that's really important to me in this world and my purpose is to kind of eliminate those stereotypes of people with disabilities. And so part of that has always been that I want the illusion of independence. I want, when people look at me, I want them to think, "Man, she does it all." "She's able to accomplish so much." And behind the scenes, there's people that help me do that. 

Being a teacher is one of the greatest gifts of my life. I wanna know that I am doing everything I can to maintain motor function so that I can be there for my family, and my students, and my husband. I would tell anyone with SMA to go and talk to their neurologist and talk to them about Evrysdi, because for me, it has been such a good option. 

This is Evrysdi in action.

Hi. My name is Janelle. I live with SMA Type 2. 

I am an artist, a businesswoman, and an equal employment opportunity assistant in Honolulu, Hawaii. I have a boyfriend. His name is Antoine, and we’ve been together for 4 years.

I get up in the morning around five o’clock on the dot, and I just get ready for the workday. I’m an Administrative Assistant, and I do clerical work at an office nearby my home.

When I’m not at work you’ll either find me drawing on my computer, a tablet, reading books, also watching movies or TV shows. They’re important to me because they are things that I can do independently without the assistance of others. It makes it feel as if it’s something that I can call my own and enjoy doing.

I have a full-time job, and I also have a side business where I sell my art.

I love how Evrysdi is an oral medication that I can take at home or wherever I am.

I have SMA, but it doesn’t stop me or my creativity.

I was motivated to seek treatment because, as I got older, I realized that my SMA was progressive, and I didn’t want to lose the ability to create art.

I asked my neurologist if there were other options available to me, and he mentioned Evrysdi as a treatment option.

When I talked with my doctor, I was impressed with the results and the fact that I could take it from home.

My biggest concern was if the treatment would be a good fit for me. What I liked about Evrysdi was that it was a medication that was able to fit my lifestyle.

I chose Evrysdi because it was a non-invasive oral medication that I could take at home. When I started treatment with Evrysdi, I was hoping to maintain the current muscle function that I had.

I have always been able to pick up a book to read, draw independently, and eat and drink. I’m able to brush my teeth independently.

My hands allow me to pick up things, hold onto a pencil or a pen, drive my wheelchair around.

My hand strength is critical in my ability to work and create art. Maintaining that strength is really important to me.

My name is Shaniqua. I am attorney living in Silver Spring, Maryland, and I have spinal muscular atrophy Type 3, also known as SMA. 

When I think about Evrysdi, I think about hope. You know, hope to maintain strength, hope for the SMA community. 

I was diagnosed with SMA around the age of two and a half. I always knew that I would lose motor function but I didn't know what it would look like. In middle school I still could walk longer distances. I noticed over the years that I was slowly losing some of my motor functions. So I use my wheelchair normally when I'm working, I'm at my desk, but sometimes I do get up and I walk around. I walk to the sink to start cooking, so I really like to cook. And so I can walk to my bedroom to get in the bed and walk to the restroom. 

Taking Evrysdi treatment is important to me because it's me considering my health and how important my health is and me doing something about it, me taking the action, and that hopefully I'll be able to maintain my strength. I spoke to my doctor about Evrysdi. Ultimately, the decision was mine whether to take the treatment or not, and I just ultimately decided that it was the best thing for me and that I was very hopeful that it would help. 

My goal is to continue and maintain some of the things that I'm able to do on my own. I have always loved to cook. I love to make meals for myself and sometimes I like to make meals for my family. It's just a joy seeing their faces after I've cooked something, so I really like being able to do that on my own. I have always been able to brush my teeth, wash my face, do my hair. 

The physical therapist normally tests my motor skills twice a year. Since starting Evrysdi, I have seen improvements in my motor functions. I've noticed that I can pick up small objects and open containers, and also I've seen that it's easier for me to get up out of my chair to a standing position. I'm happy with my experience on Evrysdi. It works for my life because it's an oral medication and I can just take it at home and I don't have to go out or to a doctor or to a hospital to take the drugs. I'm not confined to taking my medication at one place. 

When I think about Evrysdi, I think about being able to have hope, and every time I take the medication, I'm hoping that the strengths that I do have will be maintained. 

This is Evrysdi in action.

My name is Erin and this is my husband, Kevin. We live on Long Island with our two sons, Bear, who is seven and has Type 2 SMA, and Sam, who is one and a half, unaffected.

My name is Bear. I have SMA Type 2.

I think that Bear is a joyful person because he's able to find humor in almost anything, and he loves creating his own jokes, and he loves making other people laugh. He always wants to go to a museum or an aquarium. He's always curious, always wants to see those things and do those things.

I always love playing with my little brother a lot, I just chase him around and around the house, and he, yeah, he enjoys that, and since he enjoys it, I enjoy it, and since I'm happy, Mom and Dad are happy. Yeah.

Bear likes to say when he has a great answer for something or something cool to tell you, "Put your hands on your head," which we do, and then he says, "'cause your mind's gonna be blown." And that's how I feel about Evrysdi in general. It really has blown my mind.

Bear was about four and a half when he started Evrysdi. We could start to see that having something that he could take at home, having something he could take orally, that as he became older and his own independent person, that was gonna be important, you know, play such a pivotal role in every part of his day.

We had heard about Evrysdi actually online from a friend who lives nearby. Has two children with SMA.

I did hesitate about switching to Evrysdi initially because we had finally gotten Bear to what felt like a stable and safe place, that the idea of changing anything felt really scary to me, and we did talk about it a lot, Kevin and I, and we brought it all up to the neurologist.

It was really important to have the at-home treatment option for Evrysdi, so something that we could kind of fold into the background of his life. So once we spoke to our neurologist about both options, she agreed and she had been very pivotal to our other treatment decisions.

Bear has his motor skills measured in standard testing. He does a whole slew of tests, and some of them you know, sitting up on his side. How far can he lift his arms? Can he get his hands to his mouth? Sit off the edge of something? Can he kick? Things like that. So a lot of PT testing, OT testing, being able to lift different weights until he gets to one that's too heavy. And I think that seeing those benchmarks kind of increase is really important to him. He loves being able to beat his old score and it's a lot of hard work, but you know, he gets through them each time and he's impressed by his own strength, which is important.

Yeah, so he has therapies all week, every week.

I've noticed that Bear has a lot of improved arm strength and hand strength. I've seen that in his ability to lift a cup to his mouth, his ability to write with different writing utensils, and his ability to grasp things tighter. And when people go to hand him something, you know, it doesn't just fall to his lap. He can actually take it, which has been a big change in his interaction, especially with other children. And that one's really important to him and me.

I can definitely hold myself up a lot easier. I feel like I've accomplished that.

He notices when he's able to do more things by himself, you know, thanks to treatments and getting a little bit stronger, he can get his own hand back on his joystick, which is a key piece because if he's driving around on his own, he wants to go around the other aisle of the grocery store, which is a big deal for him.

Like a seven-year-old, he loves video games, those little movements in his fingers to be able to play those games, like, it makes a huge difference. And also on his iPad, being able to reach things.

With Dad, I love playing video games with him. I love painting with Mommy.

When I think about giving Bear his treatment at home, I am always impressed. It feels kind of unbelievable that we went from really having no options to having a treatment that is in my refrigerator, that I can travel with, that he can take anywhere, that I can give it to him if he's taking a nap because it goes through his G-tube. And it's just amazing to me that something so small is having such an impact on his life.

For other families that are considering Evrysdi, of course, talk to your neurologist. I have to say, ask them anything and everything. They want to talk to you, they have the information, that is what they're there for, and don't be afraid of that. When I think about everything that Bear has been through, and how he was versus how he is today, I really am, really astounded.

So any parents that are concerned about or worried about side effects when it comes to Evrysdi, first I would say completely understandable. Whenever we've considered different treatment options for Bear, we've of course looked at all the side effects, so I think that looking at all of the options, doing as much research as possible, finding out what fits best in your lifestyle, is really important. And we've never noticed any side effects for him since the start of treatment really, so we've been looking at that.

For Bear's future, we're really just hoping that we can help kind of clear the way for him to be who he's already becoming, kind of, you know, just adventurous, and joyful and fun.

Bear has a great, strong personality and an amazing spirit, and I think we just hope that he takes that with him wherever he goes.

This is Evrysdi in action.

I will never take Evrysdi for granted because I know what it was like 40 years ago. And so, having the ability to take that treatment is never wasted on me. I love my work as a voice-over artist. But I'm uniquely qualified for it, I understand technical aspect of it. Having worked at radio stations, I know what I need to have, equipment-wise, room-wise, acoustic-wise. I have friends who are or have been retired, and I have no desire to do that. For me, retirement means doing something that I enjoy, and I've always had work that I enjoy. A little bit technical, a little bit creative, a little bit fun, and this is something that I can do.

I've always done physical work, I've always been active. The last few years of high school, it was, became prevalent and obvious something was wrong. And I decided that, well, I can fix this, I can just go to the gym. So I did. I went to the gym. And on about the second machine, the owner of the gym looks at me and says, "What's your problem?" And I’ll admit, that's really the first time that it hit me. You know what, something's wrong. It was a couple of weeks later with his help I had an appointment at the local neurology center at the university hospital down the road, and that's when it all started. There comes the acceptance, there comes the realization that you need to do all you can do, but it's still never going to go away.

But imagine there's a hundred things that you do every day that are important. You get up in the morning, you stand up, you walk to the bathroom, you kiss your wife, you answer the phone, you hug your kids. There's more than a hundred things, but imagine there's a hundred things that you do. And with this disease, those go away. I found out about Evrysdi because I kept looking for what's coming next. What drove me to try Evrysdi were the good reports I was hearing from the other clinical trials.

When Evrysdi became available, it was clear to me, not only was it going to be the drug for me, but the method of delivery was something that I could do, I could do from home. We've noticed small improvements and I will continue taking it. I've been happy with them, and the doctors have been happy too. If there's one word that I could use to describe the future with Evrysdi, it would be hope.