500 episodes

Daily, digital coverage of the latest SMA news and perspectives.

SMA News & Perspectives SMA News Today

    • Health & Fitness

Daily, digital coverage of the latest SMA news and perspectives.

    Scholar Rock Shares Design of Phase 3 Trial Testing of Apitegromab & Staying Organized With SMA

    Scholar Rock Shares Design of Phase 3 Trial Testing of Apitegromab & Staying Organized With SMA

    SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock's global apitegromab trial, likely to open next year, will test its muscle-directed therapy in type 2 and 3 patients ages 2–21.

    Also, Alyssa Silva’s recent column is timely as it is a popular time of the year for organization. In, “Staying Organized Helps Me Simplify Life With SMA,” she talks about ways she stays organized so when life becomes overwhelming, she doesn’t have to worry about small things like where her cell phone charger is.


    Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

    • 12 min
    #98: How to Manage Caregivers, a Chat with SMA Contributors DeAnn Runge and Michael Morale

    #98: How to Manage Caregivers, a Chat with SMA Contributors DeAnn Runge and Michael Morale

    In episode 98, host Kevin Schaefer talks with fellow SMA News Today contributors about hiring and managing caregivers. Listen as Kevin talks with DeAnn Runge and Michael Morale about their experiences with home healthcare, and how they find the right people. These panelists also discuss two recent columns from our main website.

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    Join the conversation about caregivers here: https://smanewstoday.com/forums/forums/topic/starting-the-search-for-new-caregivers/

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    Columns:

    - ‘Don’t Quit Before the Miracle Happens’ by Sherry Toh - https://smanewstoday.com/columns/2022/01/05/instead-new-years-resolutions-im-making-playlist/

    - Sharing Our Stories With the SMA Community’s Next Generation by Halsey Blocher - https://smanewstoday.com/columns/2022/01/07/sharing-our-stories-with-next-generation-sma-community/

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    To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com

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    To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

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    For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

    • 58 min
    Spinraza May Restore Development of Motor Neurons & Why Finding Reliable SMA Carers Is Not Easy

    Spinraza May Restore Development of Motor Neurons & Why Finding Reliable SMA Carers Is Not Easy

    SMA News Today’s multimedia associate, Price Wooldridge, discuses how a study in symptomatic SMA children suggests Spinraza also works to return development to these nerve cells, especially if given early.

    Also, with a vaccine mandate looming, DeAnn shares how this adds stress to an already difficult situation where retaining caregivers is concerned. She points out that wage restrictions and the nature of the job itself already make finding reliable staff difficult. Adding a vaccine mandate on top of that makes it virtually impossible.

    Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

    • 7 min
    Son With SMA Inspires Character on ‘Ordinary Joe’ TV Show & How SMA Can Shape Creativity

    Son With SMA Inspires Character on ‘Ordinary Joe’ TV Show & How SMA Can Shape Creativity

    SMA News Today’s multimedia associate, Price Wooldridge reads an article about John Gluck, who has a type of muscular dystrophy, portrays versions of Joe's wheelchair-bound son with SMA on the NBC series "Ordinary Joe."

    Also, in Kevin Schaefer’s recent article, “Tick, Tick… SMA Adulthood,” he draws parallels between his life and the Netflix original movie, “Tick, Tick… Boom!.” Not only does he relate to losing friends all too soon, but he’s also struggled with balancing ambition and contentment.

    Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

    • 11 min
    Evrysdi May Be Available in Early 2022 to Eligible UK Patients &Modifying a Wheelchair for SMA Needs

    Evrysdi May Be Available in Early 2022 to Eligible UK Patients &Modifying a Wheelchair for SMA Needs

    SMA News Today’s multimedia associate, Price Wooldridge, discusses how The National Institute for Health and Care Excellence has recommended that Evrysdi be provided at low or no cost to eligible SMA patients in England.

    Also, the process of modifying a wheelchair for specific needs is no easy task. DeAnn Runge shares how difficult it’s been for her simply to receive comfortable arm rest pads. Even after replacing them, they’re not what she hoped for. She’s now contemplating what her next action should be.

    Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

    • 10 min
    Spinraza Improves Hand Dexterity in SMA Type 2 Children & Achieving Ambitions with SMA

    Spinraza Improves Hand Dexterity in SMA Type 2 Children & Achieving Ambitions with SMA

    SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improved fine manual dexterity in both hands of five children with SMA type 2 over 1.5 years of treatment, a case series shows.

    As the new year gets underway it’s a great time to hear what motivates people. In Ari Anderson’s recent column, “The Blessings That Spark My Ambitions for the New Year,” he talks about an opportunity that fell into place and how he’s using that to propel future achievements.

    Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

    • 10 min

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