Embracing the future

For Dan and Milly, their next steps together are exciting. Hear the reason Dan finally chose to treat his SMA and his plans for the bright days ahead.

View Transcript

It wasn't until I became an adult, that more SMA played a part in my life.

I was originally Dan's caretaker, and it turned into more. He became like my best friend, and from there, I fell in love with my best friend. And that's where we are today.

During the beginning of our relationship, I noticed that he wasn't taking care of his self. So it made me nervous. And I finally stepped in and had to let him know how I felt. And I had a very emotional conversation with him, just letting him know I love him. I wanna spend the rest of my life with him.

What really motivated me to start taking treatment was Milly actually telling me how important it was for me to be healthy for her. And so I did seek treatment, and meeting with my doctor and my neurologist. Since taking Evrysdi, I definitely have noticed my improvements, and my doctors have been very happy with the progress as well.

What we really like about Evrysdi is, it fits into our daily life. It's a liquid I take every day. Even if we travel, we just take it with us.

We give him his oral medication every morning.

Every morning after breakfast.

I work for the largest entertainment company in the world. I work at home, so it’s a long commute to my office in the house. And I pretty much work all day, take a break for lunch. And as soon as I'm done with work, I just wanna be with my wife.

Since we're so spontaneous and he likes to do things randomly, we go to the park on Saturdays, sometimes the beaches, on Wednesdays and Thursdays. Go to the dog park, just a random day. We love to play games, especially cards, because we're really competitive. We always say goodnight and I love you. We always say I love you.

Always.

Milly told me about Evrysdi. She is studying to be a doctor. So, she understood all the molecular – all the biological stuff and how it works.

I think my biggest encouragement to other adults with SMA would be to seek out Evrysdi. Talk to your doctor, because even if it doesn't have the same effects physically as it does for me, it definitely will give you hope. And that's the biggest thing for me anyways.

I am grateful for everything that I have. I want to keep moving toward my future with my family.

Questions? We're here to help.

Reach out the MySMA Support^TM team for answers to questions and to be connected to helpful resources.

Clinical Trials Icon

See the results from
clinical trials

Video Library Icon

Explore additional community videos

What is Evrysdi?

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

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 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
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 full Prescribing Information for additional Important Safety Information.

- Información de prescripción de Evrysdi^® (risdiplam). Genentech, Inc.
  
  Información de prescripción de Evrysdi^® (risdiplam). Genentech, Inc.