SMA News Today Community Forums Assistive Technology What would be your dream app to help you manage SMA?

  • What would be your dream app to help you manage SMA?

    Posted by alyssa-silva on December 12, 2025 at 12:07 pm

    Seems like there’s an app for everything these days, which got me thinking… I wonder if there are apps to help manage our diseases. 

    Last week, I talked about how AI could be a starting point for this. But I think apps could also help keep us organized in the chaos that SMA brings. For example, maybe it’s an app that keeps track of doctors’ appointments, results, etc., so that it’s not just dumped into our notes app. Or, maybe it’s a caregiver scheduling app that caregivers can share with each other and know who’s working when or if shifts need to be filled. 

    Do apps like this already exist? If not, what would be your dream app?

    alyssa-silva replied 3 months, 2 weeks ago 2 Members · 3 Replies
  • 3 Replies
  • alyssa-silva

    Member
    December 12, 2025 at 12:08 pm

    I think a super-organized digital planner focused strictly on medical appointments would be amazing. There would be different sections for appointment notes, medications, test results, and more. Maybe this already exists. I’m not sure!

  • susana-m

    Member
    December 14, 2025 at 3:27 pm

    Sure, medical appointments and care plans are great to have organized. I’ve often thought having an open source medical journal for family members would be really helpful, specially when caring for someone in hospital. Keeping track of what doctors came by, what they said, what plans and options were discussed.

    But I want to go beyond that.

    I’m thinking an app that includes what we are eating and when, medication schedules, symptoms as they happen to track long & short term patterns. The kind of app that might recognize causality or at least proximity of symptoms and issues.

    • alyssa-silva

      Member
      December 14, 2025 at 5:49 pm

      These are both great ideas. I’m sure now with AI, the ability to track short-term and long-term patterns is not something that’s too far away. Now if only we had an app developer to create something like this.

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