What Adulthood with SMA Has Really Looked Like: One Patient’s Story

I’m 29, I live in Minneapolis, and I work full-time as a software engineer. I’m easygoing, I care deeply about the people I love, and I take pride in showing up for my friends and family. I also have spinal muscular atrophy (SMA) type 3, a rare genetic condition that affects muscle strength and mobility. But SMA isn’t the whole story of my life.

When I was younger, I didn’t have an obvious diagnosis. Growing up, my parents noticed I wasn’t as active as my siblings, noting that climbing stairs seemed particularly challenging for me. It took time for doctors to understand my symptoms and diagnose me with SMA, and even then, it was just one piece of an ongoing journey. What shaped me most wasn’t my diagnosis, but the choices I made after and into my early adulthood.

I made my first big decision in my SMA journey when I was 12 years old. At the time, I could take a few steps a day in school, but after years of using my limited energy on getting around, including challenges with using a walker and a wheelchair, I chose to stop trying so hard to walk. Instead, I chose to focus on where I could use my strengths, like software engineering and other hobbies, instead of where I struggled. That wasn’t giving up — for me, that was choosing how I wanted to live. 

Adulthood came with its own challenges. When I moved to Minneapolis after college to start my career, I didn’t have the support system I’d grown up with. Caretaker plans fell through, people didn’t show up, routines broke — all in a new city where I was supposed to be “launching my life.” Those early years were tough, and I wish I’d known how much transitions like that would weigh on me. But, these experiences have taught me that living with SMA isn’t about big breakthroughs; it’s often about the quiet work of planning and consistency.

Today, my support network looks different. My fiancée and sister help with my daily routines — from getting dressed and ready in the morning to pivoting when plans inevitably shift. My friends pitch in with tasks around the house, and I help them when they need computer or tech support. It feels good to give back in ways I’m good at, just like they support me in ways they are good at and I’m thankful that I have such strong relationships with family and friends.

I also love to travel. Planning a trip sometimes feels like solving a giant puzzle: I have to find accessible hotel rooms and flights, manage my equipment needs and everything in between. It takes months of coordination, but my fiancée and I have taken that challenge head-on and have succeeded in exploring new places. We’ve been across the U.S., to Mexico, and even to Europe (we got engaged in Paris!). The logistics aren’t always fun, but the payoff—experiencing the world together—is worth it. While checking off visiting a new country is always fun, traveling represents more for me. I’m able to engage with my life fully, on my terms.

Another way I get the chance to experience life on my own terms is through my foundation: I Did It, So Can You (IDISCY) Foundation. After a conversation with my dad about giving back to people living with disabilities, I launched this nonprofit organization in 2022, which aims to provide equitable resources and scholarships for people with neuromuscular diseases and related conditions. It’s a way to help others navigate life transitions that I personally know can feel overwhelming.

My treatment journey plays into all of this, too. In college, I started treatment for SMA that required a lot of travel and time. Once I began working full time, sticking with my routine and receiving treatment became harder. Then in May 2022, I made another big decision in my SMA journey when I decided to switch to Evrysdi® (risdiplam), which is indicated for the treatment of spinal muscular atrophy (SMA) in adults and children more than two months old (please see below for additional important safety information, including serious side effects). I take the tablet formulation* once-daily at home, which allows my treatment to fit into my lifestyle and helps me keep my routines going without missing out on things that matter to me. The daily pill is also convenient, particularly when traveling, since I don’t have to worry about refrigerating medication^†. Since starting Evrysdi, my health has been stable, and that’s exactly the kind of progress I’m here for. Evrysdi has also helped me manage the progression of my disease, which lets me focus on the things I care about most: work, relationships, travel, and community.

*Evrysdi tablets are approved for people aged 2 years and older who weigh at least 44 lb (20 kg). The tablets cannot be taken with feeding tubes.                                                                                                                    †Store Evrysdi tablets at room temperature, between 68°F to 77°F (20°C to 25°C). Excursions permitted between 59°F to 86°F (15°C to 30°C). Keep the bottle tightly closed in order to protect from moisture. Please refer to the Storage and Handling section of the Prescribing Information for additional information about storage.

If someone reading this is nervous about exploring a treatment, my biggest piece of advice is simple: talk with your doctor, learn what you can, and ask the questions that matter to you. There’s no single path that’s right for everyone, but understanding your options gives you control of your life.

Advocating for myself hasn’t always been comfortable, but it allows me to set the stage for what I value and help my healthcare team consider both my disease and how I want to live my life. People often assume things about living with a condition like SMA — what I can or can’t do, what life must be like, what I should want. I’ve learned that it’s better to speak up and share your experience rather than to let someone else guess. 

Sharing my story has connected me with others who live with SMA in ways I didn’t expect. Reading about other people’s journeys and hearing how they navigate everyday challenges, reminds me that while our experiences aren’t identical, we’re not alone in the realities we face. And if my story can help even just one person feel less alone in planning, adapting, and building a life they want, then it’s worth it. 

Tristan is a Genentech partner. These are Tristan’s personal experiences and may not reflect the experiences of all patients.

What is Evrysdi?

Evrysdi is a prescription medicine used to treat spinal muscular atrophy (SMA) in children and adults. 

Important Safety Information

• Before taking Evrysdi, tell your healthcare provider about all of your medical conditions, including if you:
  • are pregnant or plan to become pregnant, as Evrysdi may harm your unborn baby. Ask your healthcare provider for advice before taking this medicine
  • are a woman who can become pregnant:
    • Before you start your treatment with Evrysdi, your healthcare provider may test you for pregnancy
    • Talk to your healthcare provider about birth control methods that may be right for you. Use birth control while on treatment and for at least 1 month after stopping Evrysdi
    • Pregnancy Registry. There is a pregnancy registry for women who take EVRYSDI during pregnancy. The purpose of this registry is to collect information about the health of the pregnant woman and her baby. If you are pregnant or become pregnant while receiving EVRYSDI, tell your healthcare provider right away. Talk to your healthcare provider about registering with the EVRYSDI pregnancy Registry. Your healthcare provider can enroll you in this registry or you can enroll by calling 1-833-760-1098 or visiting https://www.evrysdipregnancyregistry.com.
  • are an adult male. Evrysdi may affect a man’s ability to have children (fertility). Ask a healthcare provider for advice before taking this medicine
  • are breastfeeding or plan to breastfeed. It is not known if Evrysdi passes into breast milk and may harm your baby
• Tell your healthcare provider about all the medicines you take
• If you were prescribed Evrysdi for Oral Solution, you should receive Evrysdi from the pharmacy as a liquid. If the medicine in the bottle is a powder, do not use it. Contact your pharmacist for a replacement
• Avoid getting Evrysdi on your skin or in your eyes. If Evrysdi gets on your skin, wash the area with soap and water. If Evrysdi gets in your eyes, rinse your eyes with water
• The most common side effects of Evrysdi include:
  • For later-onset SMA:
    – fever
    – diarrhea
    – rash
  • For infantile-onset SMA:
    – fever
    – diarrhea
    – rash
    – runny nose, sneezing and sore throat (upper respiratory infection)
    – lung infection (lower respiratory infection)
    – constipation
    – vomiting
    – cough

These are not all of the possible side effects of Evrysdi. For more information on the risk and benefits profile of Evrysdi, ask your healthcare provider or pharmacist.

You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at 1-888-835-2555.

Please see accompanying full Prescribing Information for additional Important Safety Information.

 

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