SMA did not define her – mahrgan

It was already 5:30 in the morning when the alarm went off. So far, Nicole* has turned her daily treatment into a science. She packed up the water and snacks for the day, and then got her daughter ready to go to school. Nicole embodies the spirit of #womenpreneur-she is an SMA 3 type wife, mother and business owner.

*This is Nicole’s personal story and experience. Her SMA journey and SPINRAZA® (nusinersen) treatment results are unique to her because individual results may vary, such as disease severity, treatment start/duration time. Biogen compensates Nicole for sharing her experience publicly.

Nicole has always been a super winner. By the age of 16, she graduated from high school. Within two years, she received an associate degree in fine arts, and returned to visual communication for a bachelor’s degree. After graduation, Nicole got an incredible job and met her future husband within a few years.

They all want a family, but Nicole knows that she has an undiagnosed physical illness. Fearing that her condition might be inherited, she went to her GP for genetic testing and was eventually diagnosed with SMA.

Nicole quote picture“Things are going well, but as the years go by, my SMA has gotten worse. I have been hoping for treatment, and then in December 2016, I received a holiday gift. I received a reminder on my phone: SPINRAZA® has been approved by the FDA.”

Nicole arranged to meet with her neurologist the next day to discuss the potential benefits and risks of SPINRAZA. Need to be monitored to check for bleeding and kidney damage. Some common side effects include lower respiratory tract infections, fever, headache, vomiting, back pain, and post-lumbar puncture syndrome.

Dosage table

“In January 2017, my neurologist submitted documents to start the insurance approval process and find the location of the nursing facility. I arranged for the first treatment in March.”

SPINRAZA is administered intrathecally by or under the guidance of a healthcare professional with lumbar puncture experience. SPINRAZA (recommended dose is 12 mg (5ml) per administration) starts with four initial loading doses. After these four initial loading doses, SPINRAZA is administered at a maintenance dose three times a year, or every four months.

After taking SPINRAZA for several years, Nicole heard of a new treatment for SMA. Thinking it was a good treatment option for her, she tried another treatment. “In the end, it was not the best for me. My doctor and I decided to switch back to SPINRAZA. Although everyone’s experience will be different, this is the best decision for me.”

Nicole quotes 2 pictures“Safety and effectiveness have always been important to me. Before I first started using SPINRAZA, I read and discussed the data and side effects with my doctor, and did my own research before finally deciding to try it. In retrospect When I talked to my doctor about shutting down SPINRAZA, I realized that my decision was based on the idea of ​​trying “new things”, but it didn’t work for me. My experience in all this made me realize that I would review clinical The importance of data and real-world evidence. Going back to SPINRAZA is my best choice. It is important for me to know that 11,000 people worldwide have received SPINRAZA treatment.1 That (from 3 days to 80 years old)2-5 People of almost every age group have taken SPINRAZA. “

Before restarting, she discussed the potential benefits and risks of switching back to SPINRAZA with her neurologist, and they worked closely together to set goals and track the progress or stability of her SMA.

Nicole admits that SMA has its ups and downs, but it does not define her. With the help of her family and doctors, she led her own life.

“For me, it has always been focused on things-focusing on what you can do and solving what you can’t do. It is adapting to finding ways to do what you think you can’t do.”

Click here to learn more about the safety and effectiveness of SPINRAZA and listen to the story of hope.


SPINRAZA® (nusinersen) is a prescription drug used to treat spinal muscular atrophy (SMA) in children and adults.

Important safety information

Increased risk of bleeding complications Observed after taking similar drugs. Your healthcare provider should perform blood tests to monitor for signs of these risks before you start treatment with SPINRAZA and before each dose. If accidental bleeding occurs, seek medical attention.

Increase the risk of kidney damage, including acute kidney inflammation that can be fatal, It has been observed after taking similar drugs. Your healthcare provider should perform a urine test before you start treatment with SPINRAZA and before each dose to monitor for signs of this risk.

The most common side effects of SPINRAZA These include lower respiratory tract infections, fever, constipation, headache, vomiting, back pain, and post-lumbar puncture syndrome.

These are not all possible side effects of SPINRAZA. Call your healthcare provider for medical advice about side effects. You can call 1-800-FDA-1088 to report side effects to the FDA.

Before taking SPINRAZA, If you are pregnant or planning to become pregnant, please tell your healthcare provider.

See full prescribing information.

This information is not intended to replace discussions with your healthcare provider.


1. Based on commercial patients, early access patients and clinical trial participants as of July 2021.
2. Including clinical trial patients.
3. The clinical study of SPINRAZA did not include a sufficient number of subjects 65 years and older to determine whether their response is different from that of younger patients.
4. The clinical study of SPINRAZA includes patients from 3 days to 16 years old at the time of the first administration.
5. Passed by commercial patients based in the United States (including Puerto Rico)
December 2020.

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