
Preparing for the future
Hear the perspectives of multiple families about why it’s important to be knowledgeable about SMA and its management even after treatment.
Navigating life with SMA
Navigating life with SMA
NATALIE: I think early on as an SMA mom, other moms will teach you to advocate and fight for your child. I feel like when your child struggles on a daily basis with things, you’re gonna fight just a little bit harder.
MILAN: Several times we have gone to doctors and to pediatricians for Evelyn’s checkups or meet a new pediatrician and they have no idea what SMA is. It’s important to be able to communicate with people and explain who Evelyn is and where she’s come from and the struggles that she has.
ELENA: When we have to go to a doctor I am prepared to, to just give a perspective to the doctor. Ah, and help them to, to see how, ah, how they can help.
TINA: When you’re stepping into an atmosphere, where they’re not familiar with your child or your child’s case, you need to make sure that you’re being heard. Sometimes it’s very hard but us as parents, we know our children, and we know what works and what doesn’t work for them.
TORENCE: One of the biggest things is definitely trying to find ways to get things that they may need, whether it’s equipment or it could be a brace that they may need or a harness for whatever wheelchair.
NATALIE: It’s huge to be an advocate for your kid. It makes their life easier as they get older. Teaches them to advocate for themselves. Nobody knows your kid like you do and your kid knows that.
Close the transcriptHear the perspectives of multiple families about why it’s important to be knowledgeable about SMA and its management even after treatment.
Watch as an SMA caregiver describes the moment her daughter said, “Momma” for the first time and why that single word meant so much for her to hear.
Learn how newborn screening and having SMA treatments can help improve the lives of children with SMA.
Hear from SMA families
What is the most important information I should know about
ZOLGENSMA?
What is the most important information I should know about ZOLGENSMA?
What should I watch for before and after infusion with ZOLGENSMA?
What do I need to know about vaccinations and ZOLGENSMA?
Do I need to take precautions with the patient’s bodily waste?
What are the possible or likely side effects of ZOLGENSMA?
What is ZOLGENSMA?
ZOLGENSMA is a prescription gene therapy used to treat children less than 2 years old with spinal muscular atrophy (SMA). ZOLGENSMA is given as a one-time infusion into a vein. ZOLGENSMA was not evaluated in patients with advanced SMA.
The safety information provided here is not comprehensive. Talk to the patient’s doctor about any side effects that bother the patient or that don’t go away.
You are encouraged to report suspected side effects by contacting the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch, or Novartis Gene Therapies, Inc. at 833-828-3947.
Please see the Full Prescribing Information.