My Search for Nursing Care Showed Me What I Can Do
A little while ago, I went from using one nursing agency to using three. The change allowed me to find enough nurses to sustain the care I need with spinal muscular atrophy (SMA), and it…
Video Blogs
Here you will find our collection of vlogs created by people with SMA for SMA News Today. Each week, they share their personal stories and perspectives with the SMA community. Watch the latest videos below and follow us on YouTube for more.
The Emotional Impact of Asking for Help
Something that might discourage patients from seeking help in the form of a service dog or specialized equipment is the process of proving how disabled they are. But it hasn’t stopped DeAnn from going after what she knows will improve her life. In this video, she discusses why proving a disability can have such an emotional impact, but also why it’s important to go for what is needed. In her case, it’s opened doors in more ways than one.
Cure SMA Advocates for Better Wheelchair Storage for Air Travel
In a letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair handling and storage for people with spinal muscular atrophy (SMA) who travel by air. The patient advocacy organization shared its perspective…
Asking for Help Takes You to New Highs, Not Lows
Sometimes people exclaim, “I never thought I would be doing this a year ago,” to negatively describe an experience. For example, asking for extra help to survive may cause some to think they are stooping to a new and…
With a Little Help From … Wherever We Can Get It
My 3-year-old grandson, James, adores his MomMom (me!) and treats me like royalty. He gently places a pillow behind my back on the couch and insists on propping up the footrest before covering me with a…
Assistive Devices Should Be Standard in Managing SMA Type 1
Assistive equipment is vital to enhancing function, fun, and social participation in children with severe disabilities such as spinal muscular atrophy (SMA) and should be considered standard-care therapies, along with medications such as Spinraza (nusinersen). A recent…
Saying Farewell to My Beloved Canine Assistant
What follows is possibly the most difficult column I’ve ever written. Since 2020 has a recurring theme of being a never-ending dumpster fire for everyone, I suppose this bit of news was inevitable. A week…
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