Sma News & Perspectives

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Synopsis

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

Episodes

  • UK NICE Expands Access to Spinraza for SMA Type 3  The Disappointment of a Jaco Robotic Arm Denial

    UK NICE Expands Access to Spinraza for SMA Type 3 & The Disappointment of a Jaco Robotic Arm Denial

    14/05/2021 Duration: 06min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses how UK NICE expands access to Spinraza for Spinal Muscular Atrophy (SMA) Type 3 patients. Also, DeAnn Runge talks about how disappointed she is that her appeal for the Jaco Robotic Arm was denied and how she’s not giving up. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • German Study Urges Newborn SMA Screening, Citing Better Outcomes  Managing Chaos

    German Study Urges Newborn SMA Screening, Citing Better Outcomes & Managing Chaos

    12/05/2021 Duration: 09min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses a German study which recommends newborn screening for Spinal Muscular Atrophy (SMA), citing better outcomes. Also, Forums Director Kevin Schaefer reads a column about managing chaos when his caregiver’s car caught on fire. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Grant Awarded to Find Affordable Treatments for Children  SMA Would You Rather

    Grant Awarded to Find Affordable Treatments for Children & SMA Would You Rather

    10/05/2021 Duration: 05min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses a grant awared to find affordable treatments for children with Spinal Muscular Atrophy (SMA). Also, on the forums a fun game of SMA Would You Rather is going on. Every couple of weeks a question is posted to the SMA community. Questions range from temperature preference to caregiver attributes. Other forum topics include blocking out childhood trauma, the Jaco Robotic Arm process and coping mechanisms. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Novartis Poised for Phase 3b SMART Study of Zolgensma  SMA Adventures

    Novartis Poised for Phase 3b SMART Study of Zolgensma & SMA Adventures

    07/05/2021 Duration: 09min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis is poised for their Phase 3b SMART study of Zolgensma. Also, DeAnn Runge shares a recent adventure she went on to a greenhouse in the country. She even talks about how she was caught off guard and how she handled the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Danish Family Races to Raise $2.4M for Daughter’s Zolgensma Therapy  Staying True To Yourself

    Danish Family Races to Raise $2.4M for Daughter’s Zolgensma Therapy & Staying True To Yourself

    05/05/2021 Duration: 12min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses a Danish family raising $2.4 million for their daughter’s Zolgensma therapy. Also, Kevin Schaefer reads a column about staying true to himself and working in management. Link to Kevin’s column: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • #81: Interview With Chaz Hayden - Writer and YouTuber with SMA

    #81: Interview With Chaz Hayden - Writer and YouTuber with SMA

    04/05/2021 Duration: 38min

    In episode 81, host Kevin Schaefer talks with Chaz Hayden from Princeton, New Jersey. Chaz is a writer and YouTuber with SMA. He talks about growing up with SMA, starting college at a young age, and his upcoming young adult novel. ================================ Link to Chaz’s YouTube channel: https://www.youtube.com/channel/UCwPeqLbJO9s2v9UDrdbzbnQ ================================ Music Credits: Alec's Band A Young Griffin Boyle In Drag ================================ To learn more about Evrysdi, please visit https://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit https://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit https://www.smanewstoday.com

  • #AANAM – Zolgensma May Lead to Faster, Greater Gains Than Spinraza

    #AANAM – Zolgensma May Lead to Faster, Greater Gains Than Spinraza

    03/05/2021 Duration: 11min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma may lead to faster, greater gains than Spinraza in Spinal Muscular Atrophy (SMA) infants. Also, DeAnn Runge reads an article that really struck a chord with her. Halsey’s latest column, "It’s Time to Stop Stigmatizing Lifesaving Tracheostomy Tubes", dives into the unfavorable stigmatism that surrounds trachs and how that negatively impacts the disabled community. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Neurofilaments Before Spinraza May Predict Motor Improvements  Reviewing The Sound of Metal

    Neurofilaments Before Spinraza May Predict Motor Improvements & Reviewing The Sound of Metal

    30/04/2021 Duration: 09min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses neurofilaments, before beginning Spinraza, may predict motor improvements in children with Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reviews the Oscar nominated film "The Sound of Metal". The plot of which features the drummer of a heavy metal band who suddenly loses his hearing. DeAnn draws several parallels to this film in regards to her own disability. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Health Canada Approves Evrysdi for At-home Treatment

    Health Canada Approves Evrysdi for At-home Treatment

    28/04/2021 Duration: 08min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses Health Canada’s approval of Evrysdi for at-home treatment in SMA patients. Also, Forums Director Kevin Schaefer reads a column by Ari Anderson about his friendship with a North Carolina senator. Link to Ari’s column: https://smanewstoday.com/columns/2021/04/22/importance-people-recognize-my-worth-senator-thom-tillis/ Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Immune Response to Zolgensma Can Be Common in Older SMA Children

    Immune Response to Zolgensma Can Be Common in Older SMA Children

    26/04/2021 Duration: 09min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses the immune reponse to Zolgensma can be common in older Spinal Muscular Atrophy (SMA) children. Also, SMA News Today content creator DeAnn Runge focuses on a couple columns that struck a chord with her. Brianna’s latest column, "The Green-eyed Elephant in the Room", talks about something she’s had to contend with her whole life: jealously. Perceptions are a subject Alyssa tackles in her column, "Why My Teacher and I Faked My Detention in Middle School" - both give great insight regarding these issues. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Prenatal Enrollment Yields Faster Results from Newborn Screening

    Prenatal Enrollment Yields Faster Results from Newborn Screening

    23/04/2021 Duration: 09min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses prenatal enrollment of newborns for Spinal Muscular Atrophy (SMA) leads to faster results and speedier treatments. Also, DeAnn Runge shares how she turned around a frustrating situation into success all while keeping her cat entertained. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Apitegromab Improving or Stabilizing Motor Function in Children And Young Adults With Small

    Apitegromab Improving or Stabilizing Motor Function in Children And Young Adults With Small

    21/04/2021 Duration: 10min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses Apitegromab improving or stabilizing motor function in children and young adults with Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer reads a column about his wheelchair malfunctioning and how he handled the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • #80: Updates on Apitegromab and Discussing SMA Columns

    #80: Updates on Apitegromab and Discussing SMA Columns

    20/04/2021 Duration: 37min

    In episode 80, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and DeAnn Runge. They discuss updates on Scholar Rock’s treatment, Apitegromab, as well as other news stories and forum topics. Finally, they highlight some recent columns from our main website. ================================ Links to news stories and forum topics: -Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds: https://smanewstoday.com/news-posts/2021/03/30/rare-diseases-cost-us-nearly-1-trillion-economic-burden-2019-everylife-foundation-study/ - Apitegromab Over 1 Year Bolsters Motor Abilities of Types 2 and 3: TOPAZ Trial: https://smanewstoday.com/news-posts/2021/04/09/top-line-topaz-trial-data-support-apitegromab-muscle-targeted-scholar-rock-therapy/ - Sleep solutions: https://smanewstoday.com/forums/forums/topic/sleep-solutions-2/ - Trying to keep expectations in check: https://smanewstoday.com/forums/forums/topic/trying-to-keep-expectations-in-check/ ==========

  • European Alliance Calls for Newborn Screening  Allergy Season, Sleep Solutions and SMA Treatments

    European Alliance Calls for Newborn Screening & Allergy Season, Sleep Solutions and SMA Treatments

    19/04/2021 Duration: 07min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses the European Alliance for Newborn Screening calling on all European states to introduce routine screening for all newborns for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge talks about the latest topics being discussed on the forums. As allergy season is ramping up ways to combat the symptoms are an all-important area of conversation. Sleep solutions from Melatonin to pillow combinations and even a lift bed have been highlighted as well. Starting Evrysdi is causing columnist Brianna Albers to reflect on the generations of SMAers that came before her. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Architecture Of The SMN Complex Is Altered In People With SMA  Comparing Wheel Drive Wheelchairs

    Architecture Of The SMN Complex Is Altered In People With SMA & Comparing Wheel Drive Wheelchairs

    16/04/2021 Duration: 09min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses the architecture of the SMN complex, which is altered in people with Spinal Muscular Atrophy (SMA). Also, throughout her lifetime DeAnn Runge has had the unique opportunity to use rear, mid and front wheel drive wheelchairs. In her latest Dose of DeAnn vlog she shows a glimpse of all three and talks about making her decision. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Spinal Fluid Changes With Spinraza’s Use Mild, Possibly Due to Lumbar Puncture

    Spinal Fluid Changes With Spinraza’s Use Mild, Possibly Due to Lumbar Puncture

    14/04/2021 Duration: 10min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses spinal fluid changes with Spinraza’s use in patients with Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer reads a column by Ari Anderson about building and maintaining a team of “masked” advocates. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Evrysdi Approved in Europe as First Oral, At-home Treatment  The Evrysdi Chronicles

    Evrysdi Approved in Europe as First Oral, At-home Treatment & The Evrysdi Chronicles

    12/04/2021 Duration: 10min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi’s approval in Europe as the first oral, at-home treatment for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads the latest column from Brianna Albers as she continues the quest to start the SMA treatment Evrysdi, The Evrysdi Chronicles: Full Speed Ahead. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • Benefits of SMA Newborn Screening Outweigh Disadvantages In New Survey  Everyday Struggles With SMA

    Benefits of SMA Newborn Screening Outweigh Disadvantages In New Survey & Everyday Struggles With SMA

    09/04/2021 Duration: 10min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses the benefits of Spinal Muscular Atrophy (SMA) newborn screening outweighing the disadvantages. After watching a YouTube video where a wife and another friend help a gentleman with quadriplegia into a hot tub, DeAnn Runge talks about the struggles of certain activities and questions if they’re worth the effort. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

  • #79: Interview With Ainaa Farhanah, a Graphic Designer Living with SMA

    #79: Interview With Ainaa Farhanah, a Graphic Designer Living with SMA

    08/04/2021 Duration: 26min

    In episode 79, host Kevin Schaefer talks with Ainaa Farhanah from Kuala Lumpur, Malaysia. Ainaa is a graphic designer and art teacher with SMA. She talks about growing up with SMA, family, college, and advocating for others with disabilities. Note: Ainaa does have limited speech capabilities, but we chose to leave the recording as it is. We at SMA News Today want to provide our listeners with a range of voices. It is our responsibility to highlight the diversity within the SMA community. You can find the transcript of this conversation here: http://bit.ly/SMA-Podcast79-Transcript ================================ Link to Ainaa’s Instagram: https://www.instagram.com/ainaafrhanah/tagged/ ================================ Music Credits: Alec's Band A Young Griffin Boyle In Drag ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstod

  • Scholar Rock Wins US Patent for Apitegromab  Receiving The COVID-19 Vaccine And Getting Outside

    Scholar Rock Wins US Patent for Apitegromab & Receiving The COVID-19 Vaccine And Getting Outside

    07/04/2021 Duration: 07min

    SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock winning a U.S. patent to Apitegromab for treating Spinal Muscular Atrophy (SMA). Also, Kevin Schaefer talks about returning to movie theaters after receiving the COVID-19 vaccine. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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