Madison is 16 years old and like many teenagers she enjoys hiking, spending time with friends and going to the movies. Madison also has Type 2 Spinal Muscular Atrophy (SMA).
Each morning her parents or caregiver help her dress, transfer to her electric wheelchair and prepare breakfast. Madison goes to school locally in Phoenix, Arizona, where she can show her friends and classmates that even small changes can help her to participate more fully in classes.
For Madison, remaining independent and doing things separately from her parents matters. Like many people with SMA, over time she has lost some movement in her arms and hands, and has become more reliant on those around her to help with everyday activities.
Without treatment, loss of movement for people with SMA is common as the disease progresses, and doctors use a variety of scales to track progress, both in clinical studies and clinical practice. To learn more about our work and research on measurement scales that are relevant in SMAclick here.
Conversations with people with SMA and their families highlight the need for a sensitive scale that can be used to track small improvements or changes over time. The Motor Function Measure (MFM) scale achieves this with great accuracy, measuring small differences which can reflect life-changing improvements or deterioration.
The scale measures practical movements, and a three-point improvement to the score is so significant that doctors can see the difference with their own eyes. For example, a child who had to be pushed along on their bike by their parents, after showing an improvement on the MFM scale, was able to ride a bike on their own. This clearly has a huge impact on people’s daily lives.
The scale can be used to measure improvements in a broad range of people with SMA, from weaker to stronger patients.
Josh and Maylan are both in their twenties. They have Type 2 SMA. For many young adults, their twenties are a time of self-discovery, self-expression and being fiercely independent. For Josh and Maylan it is no different – their SMA just means some small adjustments along the way.
It is important, not only for doctors, but also for those living with SMA and their families, to be able to track even the slightest changes in their ability to move over time. No matter how severe a person’s SMA or what type they have, even small improvements to motor function can translate to a meaningful and significant change in their quality of life.