Sma News & Perspectives

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Sinopsis

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

Episodios

  • How Growth-Friendly Spinal Implants May Help SMA Children Before Fusion Surgery

    How Growth-Friendly Spinal Implants May Help SMA Children Before Fusion Surgery

    08/05/2020 Duración: 06min

    Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability. SMA News Today’s multimedia associate, Price Wooldridge, discusses how growth-friendly spinal implants may help SMA children before fusion surgery. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • How SMA-Related Humor Presents Itself in Unexpected Moments, Fundraising Options  Online Therapy

    How SMA-Related Humor Presents Itself in Unexpected Moments, Fundraising Options & Online Therapy

    06/05/2020 Duración: 05min

    Forums Director Kevin Schaefer talks about how SMA-related humor presents itself in unexpected moments. And also, this week the topics included on the forums range from discussing fundraising options in the current environment, using online therapy platforms such as Talkspace and even a book discussion. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

  • #57 - Interview with Heather Kerstetter

    #57 - Interview with Heather Kerstetter

    05/05/2020 Duración: 26min

    In episode 57, host Kevin Schaefer interviews Heather Kerstetter from Philadelphia, Pennsylvania. Heather is a social worker who has SMA Type 3. She talks about growing up with SMA, relationships, and her advocacy work for people with disabilities. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

  • How Taking Part in Adapted Sports Improves Mental Health in Patients With SMA

    How Taking Part in Adapted Sports Improves Mental Health in Patients With SMA

    04/05/2020 Duración: 08min

    Forums moderator DeAnn Runge discusses how looking at what makes her life easier now determines what would make her life easier moving forward. SMA News Today’s multimedia associate, Price Wooldridge, discusses how taking part in adapted sports improves mental health in patients with Spinal Muscular Atrophy and other neuromuscular disorders. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Discussing The Lack of Muscle Cell Signaling Which is Seen to Kill Motor Neurons in SMA-LED2

    Discussing The Lack of Muscle Cell Signaling Which is Seen to Kill Motor Neurons in SMA-LED2

    01/05/2020 Duración: 06min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses the lack of muscle cell signaling which is seen to kill motor neurons in SMA-LED2. SMA News Today’s Senior Director of Multichannel Content, Michael Morale, talks about how he’s had to trust others to help him during the COVID-19 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Telemedicine, Therapy Platforms, Alternative Exercise Routines  Hospital Preparedness Folders

    Telemedicine, Therapy Platforms, Alternative Exercise Routines & Hospital Preparedness Folders

    29/04/2020 Duración: 05min

    Forums Director Kevin Schaefer reads from his latest column about a new at-home exercise routine he’s developed, using his electric ceiling lift. Also, on our forums over the last week we’ve covered many topics including telemedicine, therapy platforms, alternative exercise routines along with advance directives and hospital preparedness folders. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

  • Discussing Motor Gains and Safety with Zolgensma’s IT Use in a STRONG Trial

    Discussing Motor Gains and Safety with Zolgensma’s IT Use in a STRONG Trial

    27/04/2020 Duración: 09min

    While thinking about how to navigate the Coronavirus situation, forums moderator DeAnn Runge draws parallels to a family game they played. SMA News Today’s multimedia associate, Price Wooldridge, discusses motor gains and safety with Zolgensma’s IT use in a STRONG trial. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • First Patient Treated in The Phase 2/3 Trial, Assessing Higher Doses of Spinraza

    First Patient Treated in The Phase 2/3 Trial, Assessing Higher Doses of Spinraza

    24/04/2020 Duración: 06min

    Forums Director Kevin Schaefer writes about a new at-home exercise routine he’s developed, using his electric ceiling lift. SMA News Today’s multimedia associate, Price Wooldridge, discusses the first patient treated in the Phase 2/3 trial, assessing higher doses of Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Playing Phone Games and Nintendo Switch  Home Exercise Routines and Robotic Assistance Devices

    Playing Phone Games and Nintendo Switch & Home Exercise Routines and Robotic Assistance Devices

    22/04/2020 Duración: 06min

    Forums Director Kevin Schaefer talks about how the pop-culture icon Kevin Smith impacted his life, both as a writer and as a person with a disability. Also, there have been some recent discussions on the forums about keeping busy by playing phone games and using a Nintendo Switch. Creating at home exercise routines and using robotic assistance devices have also been topics of conversation. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

  • #56 - SMA Treatments Overview and “Crip Camp” Discussion

    #56 - SMA Treatments Overview and “Crip Camp” Discussion

    21/04/2020 Duración: 50min

    In episode 56, hosts Kevin Schaefer and Michael Morale provide an overview of the different SMA treatments, and discuss recent news about the experimental therapy risdiplam. Then in part two, special guest Ralph Yaniz joins Kevin and Michael to discuss the new Netflix documentary “Crip Camp.” Ralph is a columnist for Muscular Dystrophy News Today, and a disability rights activist. Listen to their thoughts on this film, which explores the early days of the disability rights movement. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

  • How Adult Patients with SMA Benefit From Spinraza Treatments

    How Adult Patients with SMA Benefit From Spinraza Treatments

    20/04/2020 Duración: 09min

    To increase her independence, forums moderator DeAnn Runge is debating if she should pursue a service dog, a JACO Robotic Arm or both. Each option presents with pros and cons. SMA News Today’s multimedia associate, Price Wooldridge, discusses how adult patients with Spinal Muscular Atrophy benefit from Spinraza treatments. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Ideas for Staying Fit and Healthy During Isolation  Approval of Zolgensma for Treating SMA in Japan

    Ideas for Staying Fit and Healthy During Isolation & Approval of Zolgensma for Treating SMA in Japan

    17/04/2020 Duración: 05min

    Forums Director Kevin Schaefer talks about ideas for staying fit and healthy during COVID-19 isolation. SMA News Today’s multimedia associate, Price Wooldridge, discusses the approval of Zolgensma for treatment of Spinal Muscular Atrophy in Japan. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Accessible Toys, Having Fun With Subscription Boxes  Kevin Schaefers Obsession With Action Figures

    Accessible Toys, Having Fun With Subscription Boxes & Kevin Schaefer's Obsession With Action Figures

    15/04/2020 Duración: 06min

    The Easter holiday looked a lot different this year than it traditionally does. Forum members shared their plans for the holiday to make it special. Accessible toys was another topic of conversation. Also don’t forget to check out DeAnn’s latest vlog on having fun with subscription boxes. Forums Director Kevin Schaefer talks about how his lifelong obsession with action figures contributes to his identity as a storyteller. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

  • Odd Jobs, Spring Cleaning  French Study Finds Improvements in Palliative Care for SMA Type 1 Babies

    Odd Jobs, Spring Cleaning & French Study Finds Improvements in Palliative Care for SMA Type 1 Babies

    13/04/2020 Duración: 06min

    Forums moderator DeAnn Runge is looking for solutions to help with odd jobs and spring cleaning. SMA News Today’s multimedia associate, Price Wooldridge, discusses a French study which finds palliative care for SMA Type 1 babies has improved. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • FDA Shifts Risdiplam Decision to August to Include Data on Older Patients

    FDA Shifts Risdiplam Decision to August to Include Data on Older Patients

    10/04/2020 Duración: 09min

    Forums Director Kevin Schaefer talks about the Stephen Hawking biopic “The Theory of Everything,” and how this film explores disability. SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA shifting it’s Risdiplam decision to August to include data on older patients. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Managing Spinraza Treatments, Caregivers, Outside Deliveries and More During COVID-19

    Managing Spinraza Treatments, Caregivers, Outside Deliveries and More During COVID-19

    08/04/2020 Duración: 05min

    COVID-19 is still a popular topic of discussion on the forums. Topics associated include continuing with Spinraza treatments, scheduling caregivers, how to handle outside deliveries and more. Also, forums Director Kevin Schaefer reviews the new Netflix documentary “Crip Camp,” which tells the story of the early disability rights movement. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

  • #55 - Interview With Victor Guerra

    #55 - Interview With Victor Guerra

    07/04/2020 Duración: 52min

    In episode 55, host Kevin Schaefer interviews Victor Guerra from Fresno, California. Victor is an entrepreneur who has SMA Type 2, and he uses his online store to promote messages of positivity and motivation. During this discussion, he talks about growing up with SMA, building his business, and dealing with medical setbacks throughout his life. Victor’s website: www.victortheinspiration.com Victor’s Instagram: @victortheinspiration Are you interested in learning more about Spinal Muscular Atrophy? Please visit www.smanewstoday.com

  • How Scoliosis Surgery in SMA Children is Linked to Permanent Motor Skill Loss

    How Scoliosis Surgery in SMA Children is Linked to Permanent Motor Skill Loss

    06/04/2020 Duración: 06min

    Amid the coronavirus crisis forums moderator DeAnn Runge has to decide if she wants to risk exposure to the virus to continue her Spinraza treatments. SMA News Today’s multimedia associate, Price Wooldridge, discusses how scoliosis surgery in SMA children is linked to permanent motor skill loss. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Discussing Markers of Inflammation Essential for AAV Gene Therapy Use  Thoughts About “Crip Camp

    Discussing Markers of Inflammation Essential for AAV Gene Therapy Use & Thoughts About “Crip Camp"

    03/04/2020 Duración: 06min

    Forums Director Kevin Schaefer talks about the new Netflix documentary “Crip Camp,” which tells the story of a summer camp in the 50s and 60s for teens with disabilities. SMA News Today’s multimedia associate, Price Wooldridge, discusses markers of inflammation essential for AAV gene therapy use. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • The SMA News Today Forums: a Place to Share Ideas That Will Brighten Spirits During Difficult Times

    The SMA News Today Forums: a Place to Share Ideas That Will Brighten Spirits During Difficult Times

    01/04/2020 Duración: 05min

    With a community full of problem solvers the forums have become a place to share ideas that will brighten spirits during these difficult times. Also, forums Director Kevin Schaefer reflects on past times of self-isolation, and how the one he’s experiencing now compares. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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