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About SMAshing
Barriers
We all have to forge our own path in life, but when you have SMA, that path can be filled with roadblocks. See how others are blazing trails despite physical, systemic, and societal obstacles. LEARN MORE…
Ordinary People Living Extraordinary Lives with SMA
SMAshing Barriers began in 2021 as an online community of individuals wanting to help others living with SMA by sharing stories of how they’ve overcome physical and societal obstacles.
Originally hosted by Tori Lacey, an outspoken disability advocate and entrepreneur, SMAshing Barriers provides an up close and personal look at people redefining what’s possible while living with SMA.
What Can you Expect from SMAshing Barriers?
- Helpful career planning tips from a pharmacist living with SMA
- Dealing with feelings of burden from a psychotherapist living with SMA type 2
- Motivation and inspiration from adaptive sports athletes
- Travel tips
- Disease information and resources for the SMA community
“Everyone has the capacity to do great things and be great. Don’t let your disability stop you from achieving them.”
Joseph Beshay,
Pharmacist, SMA type 2
Motor Function Assessments (MFAs)
in SMA
Routine motor function assessments (MFAs) are important to help track SMA disease progression. Here’s what you need to know now about MFAs. LEARN MORE…
MFAs: Why They're Important in Assessing Disease Progression
Disease-modifying treatments are designed to help slow disease progression, but how do you know your treatment is working?
Regular motor function assessments (MFAs) can help. MFAs are objective measures that assess survival, how a person feels, how they function, and how they respond to treatment and/or other interventions.
There are many MFAs, but some of the most common ones used in SMA are:
- The Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP-INTEND)
- The Hammersmith Infant Neurological Examination – Section 2 (HINE-2)
- Motor Function Measure 20/32 (MFM-20 / MFM-32)
- Gross Motor Function Measure (GMFM)
- The Hammersmith Functional Scale - Expanded (HFMSE)
- 6-Minute Walk Test (6MWT)
- Revised Upper Limb Module (RULM)
- Bayley Scales of Infant and Toddler Development - Third Edition (BSID-III)
For more information on these scales, click here.
Talk to your healthcare team about your MFAs and/or any MFAs they may be considering for you.
Frequently Asked Questions:
Q: What should I do if I have an MFA scheduled, but I'm not feeling well?
A: If you are not feeling well, or if you are tired or hungry, be sure to let your healthcare team know. Illness, tiredness and even hunger can all affect MFA scores and may not be an accurate reflection of motor milestone achievement. Your healthcare team may decide to postpone your MFA until you are feeling better.
Q: Should the same evaluator be doing my MFA each time?
A: In order to help ensure accuracy, it is preferable to have the same evaluator conduct your MFA each time, using the same equipment (if necessary), with individual test items done in the same order, within the same setting. Consistency is key in assessing change over time.
Physical Therapy (PT): What You do Between MFAs Matters
Physical and rehabilitative therapy between MFAs can be important complements to drug treatment. Not only do physical manipulation and movement exercises help with range of motion, mobility, and functioning, but meeting with members of your healthcare team between treatments allows you to connect, ask questions, and helps you stay on track with therapy.
Transition of Care
Transitioning from pediatric to adult care can be a time of uncertainty and uneasiness. See how having a solid plan in place can provide comfort, structure, and security. LEARN MORE…
Moving to Adult Care When You Have SMA
Transition of care happens at an important time of life for youth with SMA, as they are also making parallel transitions in school, work, and even living situations, not to mention changing hormonally, emotionally, and physically.
The support, comfort, and predictability of the paediatric multidisciplinary team (MDT) can be difficult to leave, especially when faced with a lot less “hand-holding” in the adult clinic. New skills need to be learned from arranging medical appointments and follow-ups to discussing treatment expectations and advocating for oneself.
Having a structured transition plan in place based on the unique needs of individuals with SMA can help ease this process, ensure continuity of care, and proactively address physical and psychosocial issues that naturally accompany SMA at this phase of life.
There are currently no standard transition of care guidelines in Canada for people living with SMA; however, we’ve compiled some best practices from various hospitals and clinics across the country – and beyond – to create this comprehensive Transition of Care Checklist.
Download the Transition of Care Checklist.
QUICK TIPS FOR SUCCESSFUL TRANSITION OF CARE:
Start transition planning early. Talk to your healthcare team about general transition of care timelines, how it works, and what to expect.
Work with your healthcare team to create an individualized transition plan that is right for you.
Ensure you have a strong support system before, during, and after transition.
If available to you, try meeting your new healthcare team before you fully transition over. You may still want to reserve time to ask specific questions of your current provider.
Discussing Treatment Options with Your Healthcare Professional
How do you decide which treatment is best suited for you? Here are a few things to consider. LEARN MORE…
Discussing Treatment Options with Your Healthcare Professional
If you are considering your treatment options, make sure you are having regular discussions with your healthcare professional about your treatment options and overall disease management.
Here are some questions and considerations to help guide your conversation:
Questions about treatment
- How does the drug work?
- What does the data say about short- and long-term efficacy?
- What does the data say about short- and long-term safety?
- How is it administered/given? How often?
- Is it covered by my provincial or private health plan?
- Can I try different treatments?
- How is the effectiveness of the treatment measured? Can we set certain goals that are specific to me?
- Are there any differences between pediatric and adult care? What is the transition like?
- How might my treatment change over time? (if at all)
Personal/Family considerations
There are other things to consider that only you and your family may feel comfortable discussing amongst yourselves. Consider the following, to help you arrive at a treatment decision that you can feel confident about:
- Treatment fitting with my/my family’s lifestyle
- General health status
- Mobility/access to treatment
- Treatment burden/likelihood that I will stick with it
- Treatment goals and expectations
- Desire to maintain function/quality of Life
- Individual preferences
Trending Topics
News, hot topics, and unique perspectives on living with a rare, progressive neuromuscular disease.
Ordinary People Living Extraordinary Lives with SMA
SMAshing Barriers began in 2021 as an online community of individuals wanting to help others living with SMA by sharing stories of how they’ve overcome physical and societal obstacles.
Originally hosted by Tori Lacey, an outspoken disability advocate and entrepreneur, SMAshing Barriers provides an up close and personal look at people redefining what’s possible while living with SMA.
What Can you Expect from SMAshing Barriers?
- Helpful career planning tips from a pharmacist living with SMA
- Dealing with feelings of burden from a psychotherapist living with SMA type 2
- Motivation and inspiration from adaptive sports athletes
- Travel tips
- Disease information and resources for the SMA community
“Everyone has the capacity to do great things and be great. Don’t let your disability stop you from achieving them.”
Joseph Beshay,
Pharmacist, SMA type 2
MFAs: Why They're Important in Assessing Disease Progression
Disease-modifying treatments are designed to help slow disease progression, but how do you know your treatment is working?
Regular motor function assessments (MFAs) can help. MFAs are objective measures that assess survival, how a person feels, how they function, and how they respond to treatment and/or other interventions.
There are many MFAs, but some of the most common ones used in SMA are:
- The Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP-INTEND)
- The Hammersmith Infant Neurological Examination – Section 2 (HINE-2)
- Motor Function Measure 20/32 (MFM-20 / MFM-32)
- Gross Motor Function Measure (GMFM)
- The Hammersmith Functional Scale - Expanded (HFMSE)
- 6-Minute Walk Test (6MWT)
- Revised Upper Limb Module (RULM)
- Bayley Scales of Infant and Toddler Development - Third Edition (BSID-III)
For more information on these scales, click here.
Talk to your healthcare team about your MFAs and/or any MFAs they may be considering for you.
Frequently Asked Questions:
Q: What should I do if I have an MFA scheduled, but I'm not feeling well?
A: If you are not feeling well, or if you are tired or hungry, be sure to let your healthcare team know. Illness, tiredness and even hunger can all affect MFA scores and may not be an accurate reflection of motor milestone achievement. Your healthcare team may decide to postpone your MFA until you are feeling better.
Q: Should the same evaluator be doing my MFA each time?
A: In order to help ensure accuracy, it is preferable to have the same evaluator conduct your MFA each time, using the same equipment (if necessary), with individual test items done in the same order, within the same setting. Consistency is key in assessing change over time.
Physical Therapy (PT): What You do Between MFAs Matters
Physical and rehabilitative therapy between MFAs can be important complements to drug treatment. Not only do physical manipulation and movement exercises help with range of motion, mobility, and functioning, but meeting with members of your healthcare team between treatments allows you to connect, ask questions, and helps you stay on track with therapy.
Moving to Adult Care When You Have SMA
Transition of care happens at an important time of life for youth with SMA, as they are also making parallel transitions in school, work, and even living situations, not to mention changing hormonally, emotionally, and physically.
The support, comfort, and predictability of the paediatric multidisciplinary team (MDT) can be difficult to leave, especially when faced with a lot less “hand-holding” in the adult clinic. New skills need to be learned from arranging medical appointments and follow-ups to discussing treatment expectations and advocating for oneself.
Having a structured transition plan in place based on the unique needs of individuals with SMA can help ease this process, ensure continuity of care, and proactively address physical and psychosocial issues that naturally accompany SMA at this phase of life.
There are currently no standard transition of care guidelines in Canada for people living with SMA; however, we’ve compiled some best practices from various hospitals and clinics across the country – and beyond – to create this comprehensive Transition of Care Checklist.
Download the Transition of Care Checklist.
QUICK TIPS FOR SUCCESSFUL TRANSITION OF CARE:
Start transition planning early. Talk to your healthcare team about general transition of care timelines, how it works, and what to expect.
Work with your healthcare team to create an individualized transition plan that is right for you.
Ensure you have a strong support system before, during, and after transition.
If available to you, try meeting your new healthcare team before you fully transition over. You may still want to reserve time to ask specific questions of your current provider.
Discussing Treatment Options with Your Healthcare Professional
If you are considering your treatment options, make sure you are having regular discussions with your healthcare professional about your treatment options and overall disease management.
Here are some questions and considerations to help guide your conversation:
Questions about treatment
- How does the drug work?
- What does the data say about short- and long-term efficacy?
- What does the data say about short- and long-term safety?
- How is it administered/given? How often?
- Is it covered by my provincial or private health plan?
- Can I try different treatments?
- How is the effectiveness of the treatment measured? Can we set certain goals that are specific to me?
- Are there any differences between pediatric and adult care? What is the transition like?
- How might my treatment change over time? (if at all)
Personal/Family considerations
There are other things to consider that only you and your family may feel comfortable discussing amongst yourselves. Consider the following, to help you arrive at a treatment decision that you can feel confident about:
- Treatment fitting with my/my family’s lifestyle
- General health status
- Mobility/access to treatment
- Treatment burden/likelihood that I will stick with it
- Treatment goals and expectations
- Desire to maintain function/quality of Life
- Individual preferences
Hear Desiree’s tips and advice on approaching motor function assessments (MFAs)
Learn more about improving the relationship between patients and healthcare providers
Here are some key tips for transitioning from paediatric to adult care as a SMA patient
Hear more about Tori’s perspective on setting treatment expectations in SMA with her healthcare team