My Moments of Inner Strength From Childhood to Adulthood
Imagine barely being able to catch a football and then becoming captain of the high school football team.
This happened to Robb* who was diagnosed with Type 2 SMA as a young child and grew up in the suburbs of Columbus, Ohio.
*This is Robb’s personal story and experience. His SMA journey and SPINRAZA treatment results are unique to him, as individual results may vary, e.g., with disease severity, initiation/duration of treatment. Biogen compensated Robb for sharing his experience publicly.
“While I was never the strongest physically, I gained my inner strength from my teammates, friends and family – my support team – to face and work through my adversities,” said 37-year-old Robb who now empowers others like him by sharing his SMA story. “Becoming football captain was a big moment in my life, but today as a teacher and a baseball coach, I understand how my football team and those relationships helped develop my grit and shape my perception of relationships.”
Robb loved sports, especially football, but with SMA being a progressive disease, it benched his hopes of ever playing. By high school, he barely had enough upper body strength to hold a knife and fork and even struggled to drive his wheelchair. So, he traded the idea of cleats for friendships with the coaches and football team, and ultimately was asked to help coach and later nominated to serve as captain of the football team.
Today, Robb’s team includes his family, friends and doctor – and together, they manage his SMA, including treating it with SPINRAZA® (nusinersen). SPINRAZA is the first FDA-approved treatment for children and adults with SMA that is designed to help people with SMA generate SMN protein by delivering the treatment directly to the central nervous system (CNS), where motor neuron loss occurs.
SPINRAZA has been studied in the longest clinical trial program in SMA, including its effect on survival, overall motor function and walking ability.
Robb started on SPINRAZA five years ago after he learned about the treatment from his sister. Before starting treatment he talked to his neurologist about 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. Today, he is one of the 11,000 people who have been treated with SPINRAZA worldwide.1
“SPINRAZA has given me hope,” said Robb. “Today, I’m thrilled treatment options are available for people with SMA, from infancy to adulthood. I remember when an SMA diagnosis was a pre-determined fate of possibly not living beyond childhood. But now, kids born with SMA have options and hope like many of us never had.”
“When I go in for treatment day, a nurse tests my ability to hold a pencil and draw a line through a maze. This is one of my inner strength moments,” said Robb. “Before SPINRAZA, I couldn’t hold a pencil. Now, I can hold a pencil. While technically, I still fail the test, I try to improve every time and smile because this is my moment of strength, my moment to control the pencil to the best of my ability.”
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 loading doses: After the four loading doses, SPINRAZA is administered every four months.
“The treatment schedule gives me more day-to-day flexibility, and works for my lifestyle,” said Robb.
“This July, I’m receiving my fifteenth dose of SPINRAZA, and my family and healthcare team will be with me to get me through treatment day,” said Robb. “While the option to try a new treatment option exists, SPINRAZA helps me maintain my strength and personal ‘pencil moment’ is a big deal to me – I don’t want to change what is working for my body.”
As a teacher, coach, father and now grandfather, Robb asks the SMA community to lean into their own “pencil moments” and on the people (i.e., team) who continually support and encourage them to tap into their inner strength, embrace hope, face adversity and never give up.
“I feel confident about sticking with SPINRAZA. For me, it’s important to know that someone from 3 days to 80 years old has been treated with SPINRAZA.” 2-5
Click here to learn more about the safety and efficacy of SPINRAZA and to hear live stories of hope from individuals.
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.
- Based on commercial patients, early access patients, and clinical trial participants through December 2020.
- Includes clinical trial patients.
- Clinical studies of SPINRAZA did not include sufficient numbers of subjects aged 65 and older to determine whether they respond differently from younger patients.
- Clinical studies of SPINRAZA included patient from 3 days to 16 years of age at first dose.
- Based on commercial patients in the US (including Puerto Rico) through December 2020.