Make a choice today that could impact your future
A 46-year-old sit-up comic, motivational speaker, and software engineer living with Type 2 SMA. Dan has been taking Evrysdi® (risdiplam) since December 2020. Evrysdi is a prescription medicine used to treat spinal muscular atrophy (SMA) in children and adults.
Diagnosed as a child, he grew up with two able-bodied brothers playing in backyards, attending school, and just generally being a kid. “I didn’t really live my life thinking, ‘Oh, I’ve got SMA.’ I was in the neighborhood with all the kids, and we just grew up. It wasn’t until I became an adult that SMA became so important in my life,” he explains.
In his early years, there were no treatments for SMA, so Dan had back surgery and physical therapy to help with his motor skills. As with many people with SMA, the subtle changes that happen from one day to the next were hard to notice until a key ability was lost. As he got older, he became weaker, losing the ability to feed himself and becoming reliant on his wheelchair. Unfortunately, he also began to let his care slip.
Enter Milly: a homecare nurse who stepped in as his caretaker and, over time, became his wife. Milly shares, “He became my best friend. And from there, I fell in love with my best friend, and that’s where we are today.”
She shares, “During the beginning of our relationship, I noticed that he wasn’t taking the best care of himself, and it really concerned me. I had a very emotional conversation with him – tears and all – letting him know that I love him, and I want him to take care of himself because I want to spend the rest of my life with him.”
After discussing treatment options, side effects, and treatment expectations, Dan and his doctor chose Evrysdi® (risdiplam): an oral medicine that may meet Dan’s treatment goals and can fit into his active life.
This was particularly important since traveling has always been a huge passion for the couple, especially road trips. They can travel with Evrysdi using a cooler to keep it at the required temperature.
Dan and Milly enjoy many other activities including spending the day at the park, going out to dinner and a movie, or an evening cooking together at home.
Since taking Evrysdi, Dan has noticed changes, and his doctors have been very happy with the progress as well. “My biggest encouragement to other adults with SMA is to seek treatment, for me that was Evrysdi. Talk to your doctor,” he shares. “I want to keep moving toward my future with my family.”
Milly echoes, “Today there are more choices for people with SMA than ever before. Getting treatment is so important. There’s just no reason not to have that conversation with your doctor.”
Dan plans to continue advocating for people with SMA, speaking with individuals and families, and enjoying life with Milly.
August is SMA Awareness month! Join us in celebrating the community and helping raise awareness for SMA!
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
- 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.