Pursuing justice for others

Meet Shaniqua: a disability rights attorney passionate about her career. See what aspects of her city life are important for her to maintain.

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.

Clinical Trials Icon

See the results from
clinical trials

Video Library Icon

Explore additional community videos

Important Safety Information and Indication

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. Talk to your healthcare provider right away if you become pregnant while taking Evrysdi. Ask about registering with the Evrysdi Pregnancy Registry, which was created to collect information about your health and your baby's health. Your healthcare provider can enroll you in this registry 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.