
Fun for the whole family
Finding activities and entertainment that are inclusive for both children with and without SMA can be a challenge. Read the top suggestions from SMA caregivers about fun things to do for the entire family.
Navigating life with SMA after treatment
Navigating life with SMA after treatment
Avoiding contagious respiratory illnesses is important for families with spinal muscular atrophy (SMA), particularly during high-risk periods such as the COVID-19 pandemic. However, many families are self-isolating for the first time and are now experiencing what caregivers and families with SMA deal with on a regular basis. With this deeper understanding about the burdens of self-isolating comes an opportunity to share advice about feeling disconnected from friends and family. Fortunately, with some creativity and a willingness to try new things, you can still be a part of what’s going on. Here are some tips from SMA caregivers on ways to stay connected while staying home:
While it feels great to be invited to catch up with friends and spend time with loved ones, sometimes it will be necessary to decline an invitation. It may be disappointing to send regrets, but there are several ways to still acknowledge that it was nice to be invited:
It can be difficult to maintain friendships while navigating times of isolation, but the silver lining is that it provides a great opportunity to educate your loved ones about your life choices. A few last pieces of advice from SMA caregivers: Practice good hygiene, make smart choices for your family, and be honest about your reasons for declining invitations so they are sure to keep rolling in.
Finding activities and entertainment that are inclusive for both children with and without SMA can be a challenge. Read the top suggestions from SMA caregivers about fun things to do for the entire family.
Even though a child receives treatment for his or her SMA, it doesn’t mean their care stops. Hear from SMA caregivers about how they learned to be strong advocates for their children in the years following treatment.
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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 AveXis at 833-828-3947.
Please see the Full Prescribing Information.