Inside Novartis’ SMAshing My Limits Campaign: Patient Voices Driving Support and Resources for SMA

Tracey Dawson, PhD

Spinal muscular atrophy (SMA), a rare neuromuscular and often fatal disorder, has seen several significant advances in treatment over the past decade, including the first approved medications and a gene therapy for pediatrics with the condition. Despite the growth in care management, many individuals with the disease still face challenges related to independence, accessibility, and mental health that are often underrecognized. In response, Novartis recently launched SMAshing My Limits, a new campaign co-created with the SMA community to highlight everyday milestones, provide tailored resources, and empower patients to celebrate their achievements.

NeurologyLive^® caught up with Tracey Dawson, PhD, senior vice president and U.S. Therapeutic Area Head of Neuroscience at Novartis, to discuss the recently launched campaign. In the interview, Dawson provides perspective on the origins of the campaign and some of its goals for patient families, as well as some of the specific practical tools and guides patients will have access to. Furthermore, she commented on the change in how SMA is perceived, while emphasizing the continued collaboration with patients and advocates to ensure efforts remain authentic and impactful.

NeurologyLive: How did SMAshing My Limits come about and what does it look to achieve?

Tracey Dawson, PhD: Novartis is proud to launch the SMAshing My Limits campaign with insights from the SMA community, particularly around accessibility, independence, and mental health support. 

This campaign was inspired by Novartis’ conversations with the SMA community. During multiple sessions, we heard firsthand that their everyday milestones – or the ways they are "SMAshing limits" – often go unnoticed. That insight led to the creation of the SMAshing My Limits campaign, which aims to reduce feelings of isolation, foster a stronger sense of connection for the SMA community, and empower individuals with SMA to celebrate their everyday wins. 

Our purpose – to reimagine medicine to improve and extend lives – goes beyond treatment. We aim to support people holistically through education, connection, and tools that help them live more independently and confidently. 

What resources should the SMA community have access to? What types of resources do they deserve to have? 

We found there’s a lack of resources and support for teens and young adults to address the daily issues they face and the impact that has on their emotional and mental health. Challenges navigating routine tasks - like lifting a pencil or navigating public transit - can carry a profound emotional and psychological toll. Repeatedly experiencing these challenges can impact a teen's perception on how likely they are to transition to adulthood and gain additional independence. 

We co-created three resources with patients to help provide support in key areas of unmet need, which were informed by individuals living with SMA through direct conversations and based on needs that they expressed. These resources include: 

• How to Explain SMA to Others: A guide to help people with SMA explain their condition to peers, teachers, and coworkers. 
• Making the Move to Adulthood: A resource to support life transitions (eg, high school to college, college to career). 
• Prompts to SMAsh Limits: A reflective tool with prompts to help individuals recognize achievements and celebrate personal milestones. 

Visit www.SMAshingMyLimits.com to explore stories and find resources aimed at helping those living with SMA ‘SMAsh limits’, with website features including: 

• SMA care and management approaches information: Educational content about managing SMA (not intended for medical advice) 
• Patient advocacy resources: Information and tools from organizations such as Cure SMA and MDA (Muscular Dystrophy Association). 

How has the perception of SMA changed over the years?

The severity of SMA varies across a spectrum of types that generally corresponds to the number of copies the individual has of the SMN2 gene, which produces a small fraction (~10%) of functional SMN protein compared with SMN1.

• Loss of motor neurons cannot be reversed, so patients with SMA with symptoms at the time of treatment will likely require some supportive respiratory, nutritional and/or musculoskeletal care to maximize functional abilities. 

Our purpose – to reimagine medicine to improve and extend lives – goes beyond treatment. We aim to support people holistically through education, connection, and tools that help them live more independently, confidently and reimagine life with SMA. 

With this campaign we wanted to spotlight patients who are SMAshing their limits and not letting their diagnosis define them to redefine what it means to be living with SMA. Our primary SMA patient advocate featured on the website is Charlie, who was diagnosed with SMA type 3 at a young age. We also feature Siara, diagnosed with SMA type 3 at a young age too. Both Charlie and Siara have inspiring SMA stories and a positive outlook on life. We are excited to continue sharing their stories with others in the SMA community through engaging video and social content, as they embody what it means to ‘SMAsh limits’. 

What is the importance of working closely with the SMA patient community? What benefits has that brought to patients and their families? 

To ensure this campaign effort would authentically reflect the needs and values of those living with SMA, patient voices and insights – alongside other SMA advocates – are infused through all aspects of this initiative, including the campaign concept that was developed and refined based on their unmet needs; messaging that aims to empower patients; and unique resources housed on SMAshingMyLimits.com that were developed to address and support the challenges they face at this stage of their life.

When we launched the campaign at Cure SMA in June 2025, the campaign messaging and patient stories resonated with the community, especially having the proof point that this effort was co-created by the community. 

Transcript was edited for clarity.