Video series: Taking control of your SMA healthcare
Madelyn Milave: Encouraging self-advocacy in SMA care
Madelyn Milave, who lives in Minnesota, was diagnosed with spinal muscular atrophy type 2 at 18 months old in 2005.…
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Madelyn Milave: Encouraging self-advocacy in SMA care
Madelyn Milave, who lives in Minnesota, was diagnosed with spinal muscular atrophy type 2 at 18 months old in 2005.…
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Madelyn Milave: Setting clear boundaries for autonomy with SMA
Madelyn Milave, who lives in Minnesota, was diagnosed with spinal muscular atrophy (SMA) type 2 at 18 months old in…
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Rio Landa: Voicing concerns and asking questions in SMA care
Rio Landa, physician whose 14-year-old son, Mateo, is diagnosed with spinal muscular atrophy (SMA) type 2, describes her approach on…
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Hugo Trevino: Being firm about what you want in your SMA care
Hugo Trevino, who has SMA type 3, shares his advice for how patients and caregivers can respond in situations where…
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The patient-provider relationship: Discussing difficult SMA issues
Kevin Schaefer, who lives with SMA type 2, and neurologist Edward Smith, MD, reflect on their preferences for how to…
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Hugo Trevino: Staying on track with SMA care
Hugo Trevino, who has SMA type 3, provides tips that help with staying on top of scheduling appointments and care…
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Rio Landa: Figuring out your SMA care team
Rio Landa, whose 14-year-old son, Mateo, was diagnosed with SMA type 2 when he was a year old, discusses how…
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The patient-provider relationship: Addressing all aspects of SMA
Kevin Schaefer, who lives with SMA type 2, and neurologist Edward Smith, MD, detail all the aspects of SMA care…
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Hugo Trevino: Finding good SMA healthcare
Hugo Trevino, who has SMA type 3, shares the red and green flags to look for when seeking healthcare providers…
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The patient-provider relationship: Optimizing SMA clinics
Kevin Schaefer, who lives with SMA type 2, and neurologist Edward Smith, MD, share the prep work they do to…
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Hugo Trevino: Maintaining independence during clinics
Hugo Trevino, who has SMA type 3, shares how he reinforces boundaries that guide medical professionals and caregivers to respect…
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Hugo Trevino: Covering all bases of care
Hugo Trevino, who has SMA type 3, describes all the types of needs his multidisciplinary healthcare team handles for him,…
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Rio Landa: Choosing doctors carefully
When choosing healthcare teams, Rio Landa wants to be confident the doctors will advocate for her son, who has SMA,…
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The patient-provider relationship: Improving team communication
Kevin Schaefer, who lives with SMA type 2, and neurologist Edward Smith, MD, reflect on challenges in healthcare team communication,…
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The patient-provider relationship: Building trust
Kevin Schaefer, who lives with SMA type 2, and neurologist Edward Smith, MD, discuss the importance of trust in building…
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Hugo Trevino: Preparing for medical appointments
Hugo Trevino, who was diagnosed with SMA type 3 when he was 5 years old, discusses his note-taking process for…
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Rio Landa: Preparing your child for medical appointments
Rio Landa, whose 14-year-old son, Mateo, was diagnosed with SMA type 2 when he was a year old, discusses how…
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The patient-provider relationship: What’s most important?
Kevin Schaefer, who lives with SMA type 2, and neurologist Edward Smith, MD, discuss what they think is the most…
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