SMA Doesn’t Define Her

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by Spinraza |

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It’s 5:30 in the morning when the alarm goes off. By now, Nicole* has gotten her treatment day routine down to a science. She packs her water and snacks for the day, then gets her daughter ready and off to school. Nicole embodies that #womenpreneur spirit—she’s a wife, mom, and business owner with SMA Type 3.

*This is Nicole’s personal story and experience. Her SMA journey and SPINRAZA® (nusinersen) treatment results are unique to her, as individual results may vary, e.g., with disease severity, initiation/duration of treatment. Biogen compensated Nicole for sharing her experience publicly.

Nicole has always been an overachiever. By age 16, she graduated high school, and within two years, she had an Associate Arts degree and went back for a BA in visual communications. Post-graduation, Nicole was offered an incredible job and within a few years met her future husband.

They both wanted a family, but Nicole knew she had an undiagnosed physical ailment. Fearing her condition might be hereditary, she asked her general practitioner for genetic testing, and was finally diagnosed with SMA.

Nicole Quote Image“Things were going well, but as the years rolled on, my SMA got worse. I always hoped there’d be a treatment, and then in December 2016, I got a holiday gift. I received an alert on my phone: SPINRAZA® is FDA approved.”

Nicole scheduled an appointment with her neurologist the next day to discuss the potential benefits and risks of SPINRAZA. Monitoring is needed to check for bleeding and kidney damage. Some of the common side effects include lower respiratory infection, fever, headache, vomiting, back pain and post-lumbar puncture syndrome.

Dosing chart

“In January 2017, my neurologist submitted the paperwork to start the insurance approval process and find a site of care facility. I scheduled my first treatment in March.”

SPINRAZA is administered intrathecally by, or under the direction of, healthcare professionals experienced in performing lumbar punctures. SPINRAZA (recommended dosage of 12 mg (5ml) per administration) begins with four initial loading doses. After these initial four loading doses, SPINRAZA is administered in maintenance doses three times a year, or every four months.

After being on SPINRAZA for several years, Nicole heard about a new treatment for SMA. Thinking it would be a good treatment option for her, she tried the other treatment for a while. “Ultimately, it wasn’t the best fit for me, and my doctor and I decided to switch back to SPINRAZA. While everyone’s experience will be different, this was the best decision for me.”

Nicole Quote 2 Image“Safety and efficacy have always been important to me. Before I initially started 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, I realized when I talked to my doctor about switching off of SPINRAZA, my decision was based on the idea of trying something ‘new,’ but it didn’t work out for me. My experience through all of this made me recognize the importance of reviewing the clinical data and real-world evidence. Returning to SPINRAZA was the best choice for me, and it is important to me to know that 11,000 people have been treated with SPINRAZA worldwide1 and that (from 3 days to 80 years old)2-5 there’s someone from almost every age group who has taken SPINRAZA.”

Before restarting, she talked to her neurologist about potential benefits and risks of switching back to SPINRAZA, and together, they worked closely to set goals and track her SMA progression or stabilization.

Nicole admits that SMA comes with ups and downs, but it does not define her. With the help of her family and doctor, she’s living life on her terms.

“For me, it’s always been mind over matter—focusing on what you can do and working around what you can’t. It’s adapting to find ways to do something you thought you couldn’t.”

Click here to learn more about safety and efficacy of SPINRAZA and to hear stories of hope.

What is SPINRAZA?

SPINRAZA® (nusinersen) is a prescription medicine used to treat spinal muscular atrophy (SMA) in pediatric and adult patients.

Important Safety Information

Increased risk of bleeding complications has been observed after administration of similar medicines. Your healthcare provider should perform blood tests before you start treatment with SPINRAZA and before each dose to monitor for signs of these risks. Seek medical attention if unexpected bleeding occurs.

Increased risk of kidney damage, including potentially fatal acute inflammation of the kidney, has been observed after administration of similar medicines. Your healthcare provider should perform urine testing before you start treatment with SPINRAZA and before each dose to monitor for signs of this risk.

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

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

Before taking SPINRAZA, tell your healthcare provider if you are pregnant or plan to become pregnant.

Please see full Prescribing Information.

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

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1. Based on commercial patients, early access patients, and clinical trial participants as of July 2021.
2. Includes clinical trial patients.
3. Clinical studies of SPINRAZA did not include sufficient numbers of subjects aged 65 and older to determine whether they respond differently from younger patients.
4. Clinical studies of SPINRAZA included patients from 3 days to 16 years of age at first dose.
5. Based on commercial patients in the US (including Puerto Rico) through
December 2020.