SMA Atlas

Navigating life with SMA after treatment

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SMA Atlas

Navigating life with SMA after treatment

A day with Slade


The steps to success

Hear SMA caregivers discuss their daily care routine and the importance of sticking to a schedule.
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MORGAN: When Slade wakes up in the morning, he is on a schedule for the rest of the day. He does respiratory therapy, which includes his cough assist, his shaker vest, and his suction machine.

MORGAN: Each one of Slade’s respiratory therapy machines are really important to him. They all help him do something that because of his SMA he is unable to do 100%.

MORGAN: After we get Slade up and ready for the day, he gets a few minutes to just roll around and play with his brother. And then he does do his first day-time feed about 8:30.

MORGAN: Slade gets an organic vegan blend of food 3 times a day. So when Slade is hooked up to food, if he’s sitting at the table, we like to usually give him a pretend spoon and bowl so he can mimic what everybody else is doing at the table.

MORGAN: During the week we do a lot of physical therapy with Slade at home. We work on a lot of things that he had done previously during his PT sessions. Slade gets adjusted 3 or 4 times a week by his dad, who’s a chiropractor, and he also goes to craniosacral therapy every other week.

DARYN: Scoliosis is super common in kiddos with SMA and so we wanna makes sure that his spine is well protected and able to function the way that he’s supposed to.

MORGAN: It’s very important to keep him stretched because for the longest time he didn’t have much movement. His legs specifically got very tight.

MORGAN: After Slade has a little bit of PT time, he plays with his brother. His favorite thing to do right now is to do what he’s doing—just rolling toys around and tractors and he loves to watch the wheels and to dump dump trucks. Just a lot of boy things.

MORGAN: When he lays down for a nap, he gets hooked up to his BiPAP and also his pulse ox machine. Every time he sleeps, we make sure to monitor his oxygen levels and his heart rate. And he also gets hooked up to his lunchtime feed that runs for about an hour and a half while he sleeps. When Slade wakes up from his nap, it’s really just a repeat of the morning time.

MORGAN: Slade is the happiest baby that I’ve ever seen. He wakes up with a smile on his face every day. He goes to bed with a smile on his face. He really has the best personality for his situation.

MORGAN: One thing that’s gonna work for one person, will, you know, may not work for somebody else. So I think giving yourself grace on what’s working for you, what’s not working. I feel like that was just kind of a live-and-learn process for us. If it’s not working, you know, reach out to somebody—the SMA community is a very tight-knit community, thankfully they’re gonna answer honestly and be helpful, which is nice.

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Slade, who was diagnosed with SMA Type 1, laying on a blanket and eating a popsicle

Slade’s first popsicle

Watch Slade taste the sweeter side of life in this video commemorating his first popsicle.

Ryker, who was diagnosed with SMA Type 1, laughing while looking in a mirror

A day with Ryker

Hear about the daily routine for Ryker, who was diagnosed with SMA Type 1, and the philosophy of gratitude that his mother has embraced.

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Important Safety Information

What is the most important information I should know about ZOLGENSMA?

  • ZOLGENSMA can cause acute serious liver injury. Liver enzymes could become elevated and may reflect acute serious liver injury in children who receive ZOLGENSMA.
  • Patients will receive an oral corticosteroid before and after infusion with ZOLGENSMA and will undergo regular blood tests to monitor liver function.

Important Safety Information

What is the most important information I should know about ZOLGENSMA?

  • ZOLGENSMA can cause acute serious liver injury. Liver enzymes could become elevated and may reflect acute serious liver injury in children who receive ZOLGENSMA.
  • Patients will receive an oral corticosteroid before and after infusion with ZOLGENSMA and will undergo regular blood tests to monitor liver function.
  • Contact the patient’s doctor immediately if the patient’s skin and/or whites of the eyes appear yellowish, or if the patient misses a dose of the corticosteroid or vomits it up.

What should I watch for before and after infusion with ZOLGENSMA?

  • Viral respiratory infections before or after ZOLGENSMA infusion can lead to more serious complications. Contact the patient’s doctor immediately if you see signs of a possible viral respiratory infection such as coughing, wheezing, sneezing, runny nose, sore throat, or fever.
  • Decreased platelet counts could occur following infusion with ZOLGENSMA. Seek immediate medical attention if the patient experiences unexpected bleeding or bruising.
  • Thrombotic microangiopathy (TMA) has been reported to occur approximately one week after ZOLGENSMA infusion. Caregivers should seek immediate medical attention if the patient experiences any signs or symptoms of TMA, such as unexpected bruising or bleeding, seizures, or decreased urine output.

What do I need to know about vaccinations and ZOLGENSMA?

  • Talk with the patient’s doctor to decide if adjustments to the vaccination schedule are needed to accommodate treatment with a corticosteroid.
  • Protection against respiratory syncytial virus (RSV) is recommended.

Do I need to take precautions with the patient’s bodily waste?

Temporarily, small amounts of ZOLGENSMA may be found in the patient’s stool. Use good hand hygiene when coming into direct contact with bodily waste for 1 month after infusion with ZOLGENSMA. Disposable diapers should be sealed in disposable trash bags and thrown out with regular trash.

What are the possible or likely side effects of ZOLGENSMA?

The most common side effects that occurred in patients treated with ZOLGENSMA were elevated liver enzymes and vomiting.

Indication

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.