Zolgensma Available Soon to Eligible SMA Type 1 Patients in England, Scotland
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being added to the list of eligible medications for Spinal Muscular Atrophy (SMA) Type 1 patients in England and Scotland. Also, despite a global pandemic complicating the process DeAnn Runge received her new wheelchair in record time. She did have to make compromises though and talks about getting used to going from ...
9m Mar 19, 2021
9m
Muscles Controlling Eye Movements Not Affected by SMA & Never Give Up Searching for Your Advocates
SMA News Today’s multimedia associate, Price Wooldridge, discusses how adults with Spinal Muscular Atrophy (SMA) usually don’t experience weakness or impairment of eye muscles. Forums Director Kevin Schaefer reads a column by Ari Anderson about pursuing a team of advocates. Link to Ari’s column: https://smanewstoday.com/columns/2021/03/11/knocking-on-doors-searching-for-advocates/ Are you in...
8m Mar 17, 2021
8m
78: Discussing Switching Treatments, News Stories, and Recent Columns
In episode 78, host Kevin Schaefer talks with fellow SMA News Today contributor and Senior Director Michael Morale. They discuss Michael’s decision to switch back to Spinraza, treatment updates, and other news stories. Finally, they highlight some recent columns from our main website. ================================ Links to news stories: -Cure SMA offering free virtual therapy sessions htt...
41m Mar 16, 2021
41m
The Challenges Of Life as a Teen And Young Adult With SMA & Being Denied Access to SMA Treatment
SMA News Today’s multimedia associate, Price Wooldridge, discusses the challenges of life as a teen and young adult with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge shares the latest column by Brianna Albers. It goes into detail on why she’s being denied treatment and her feelings regarding the process. Are you interested in learning more about spinal muscu...
13m Mar 15, 2021
13m
CHMP Favors EU Approval of Evrysdi as 1st Oral, At-home SMA Treatment & Discussing GI Issues
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Committee for Medicinal Products for Human Use (CHMP) approval of Evrysdi as the first oral, at-home Spinal Muscular Atrophy (SMA) treatment. DeAnn Runge talks about her hesitancy to meet with a dietician to discuss GI issues she’s been dealing with. Are you interested in learning more about spinal muscular atrophy? If so,...
9m Mar 12, 2021
9m
Evrysdi Seen to Improve Survival, Motor Development of Infants with SMA Type 1
SMA News Today’s multimedia associate, Price Wooldridge, discusses Evrysdi improving survival and motor development in infants with Spinal Muscular Atrophy Type 1. Forums Director Kevin Schaefer talks about managing his mental health and embracing the stillness. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
11m Mar 10, 2021
11m
Mother Raises 4 Adopted Girls From China With SMA, Chronic Illnesses
SMA News Today’s multimedia associate, Price Wooldridge, discusses a mother who has adopted and is raising four girls from China with Spinal Muscular Atrophy (SMA). Also, a variety of topics are being talked about on the SMA News Today forums because of the diverse community that not only includes those who have SMA but parents and caregivers as well. Recent conversations include van conversio...
10m Mar 08, 2021
10m
Brain Involvement in SMA Type 1 Still Poorly Understood & Struggling to Personalize New Wheelchair
SMA News Today’s multimedia associate, Price Wooldridge, discusses why brain involvement in Spinal Muscular Atrophy Type 1 is still poorly understood. Also, DeAnn Runge talks about how she’s struggling to personalize her new chair. Right now she feels like it’s just another piece of equipment, but would like ideas on how to make it more unique to her. Are you interested in learning more about...
9m Mar 05, 2021
9m
Study Finds Varying Perspectives From Parents on Spinraza Therapy for Children
SMA News Today’s multimedia associate, Price Wooldridge, discusses the varying perspectives from parents on Spinraza therapy for their children. Forums Director Kevin Schaefer reads a column by Ari Anderson about what it means to be rare. Link to Ari’s column: https://smanewstoday.com/columns/2021/02/25/rare-diseases-flying-under-radar/ Are you interested in learning more about spinal muscul...
15m Mar 03, 2021
15m
#77: Interview With Jeremy Camp, SMA Parent and Advocate
In episode 77, host Kevin Schaefer talks with Jeremy Camp from San Diego, California. Jeremy and his wife Amanda have three children, and their youngest son Asher has SMA Type 1. He talks about his family’s SMA journey, his personal life, and his mantra of surrendering to the situation. ================================ Link to Asher’s Facebook page: https://www.facebook.com/asherlennonlionsma...
36m Mar 02, 2021
36m
New SMN-boosting Molecule Shows Promise as Add-on Therapy & Rare Disease Day And Forums Topics
SMA News Today’s multimedia associate, Price Wooldridge, discusses a new SMN-boosting molecule which shows promise as an add-on therapy for Spinal Muscular Atrophy (SMA). Also, Rare Disease Day is a day to recognize lives touched by rare diseases such as SMA. Discussions in the forums have revolved around this subject as have columns and even the latest Dose of DeAnn vlog where she interviews ...
9m Mar 01, 2021
9m
Rare Case of SMA Linked With Myoclonic Epilepsy Detailed in Report
SMA News Today’s multimedia associate, Price Wooldridge, discusses a rare case of Spinal Muscular Atrophy linked with a progressive myoclonic epilepsy. Balancing mind and body can be tricky. DeAnn Runge shares her struggles with accepting her limitations as it pertains to purchasing products she can use. Are you interested in learning more about spinal muscular atrophy? If so, please visit ht...
7m Feb 26, 2021
7m
Assistive Devices Should Be Standard in Managing SMA Type 1 & I’m Grateful for My Friends
SMA News Today’s multimedia associate, Price Wooldridge, discusses assistive devices which should be standard in managing Spinal Muscular Atrophy (SMA) Type 1. Forums Director Kevin Schaefer talks about the close friends in his life, and how these relationships connect to his place in the rare disease community. To learn more about spinal muscular atrophy, visit our website at http://www.sman...
12m Feb 24, 2021
12m
Quantitative MRI Is Sensitive Measure of Muscle Decline
SMA News Today’s multimedia associate, Price Wooldridge, discusses quantitative MRI imaging showing itself to be a sensitive measure of decline in young adults with Spinal Muscular Atrophy (SMA). Now that various treatments are available for SMA, it can be easy to forget that many individuals are starting treatment for the very first time. Alyssa Silva’s latest column details her feelings as o...
11m Feb 22, 2021
11m
Spinraza Improves Motor Function in Case of Teenager with Late-onset SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in the case of a teenager with late-onset Spinal Muscular Atrophy (SMA). SMA News Today content creator DeAnn Runge shares a discussion she had regarding accessibility. Despite having come a long way where accessibility is concerned not everyone feels it’s worthwhile. Are you interested in ...
8m Feb 19, 2021
8m
A ‘Miracle’: Spinraza Gives Boy a Chance to Grow Up & Life Is an Adventure, So Let’s Be Pioneers
SMA News Today’s multimedia associate, Price Wooldridge, discusses a “miracle” when Spinraza gives a boy, now 5 years old, a chance to grow up fast and show good progress. Also, forums Director Kevin Schaefer reads a column by Ari Anderson about being a pioneer with SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
14m Feb 17, 2021
14m
#76: Discussing Treatment Updates, Vaccine Access, and Recent Columns
In episode 76, host Kevin Schaefer talks with fellow SMA News Today contributor DeAnn Runge. They discuss news regarding increasing the dosage of Spinraza in SMA patients, updates on Scholar Rock’s treatment, and an upcoming career webinar series from Cure SMA. Kevin and DeAnn also discuss mental and emotional health amid the pandemic, as well as access to the COVID-19 vaccine. Finally, they h...
50m Feb 16, 2021
50m
EMBRACE Trial Supports Spinraza’s Benefits in Broad Range of SMA Patients
SMA News Today’s multimedia associate, Price Wooldridge, discusses the EMBRACE Trial which supports Spinraza’s benefits in a broad range of Spinal Muscular Atrophy (SMA) patients. Also, DeAnn Runge welcomes new SMA News Today columnist, Sherry Toh, by reading her debut article, "Welcome to ‘Wandering the Lines,’ Our Journey Into the Unknown". Are you interested in learning more about spinal m...
12m Feb 15, 2021
12m
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
SMA News Today’s multimedia associate, Price Wooldridge, discusses the National Organization for Rare Disorders (NORD) 6th “state report card”, noting progress, but raising concerns. Plus, closing in on a year after the global pandemic emerged DeAnn Runge shares her thoughts on receiving one of the first vaccines available. She also points out seeing societies inequities during vaccine distrib...
8m Feb 12, 2021
8m
Rare Disease Groups, Pharmas Join SMA Europe Push for Newborn Screening
SMA News Today’s multimedia associate, Price Wooldridge, discusses rare disease groups and pharmaceutical companies, joining SMA Europe in a push for newborn screening for Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer shares his thoughts on “Disability Visibility,” a collection of first-person essays from a wide range of disabled authors. Are you interested in learning more ab...
8m Feb 10, 2021
8m
Motor Function, Breathing Important in Choosing Treatment
SMA News Today’s multimedia associate, Price Wooldridge, discusses improvement in motor function, breathing, and ease of administration are important factors when Spinal Muscular Atrophy (SMA) patients and caregivers decide on treatment options. Plus, recent conversations in the SMA News Today forums include the efficacy of the new vaccines in combination with some SMA treatments. Also what to...
8m Feb 08, 2021
8m
More Severe COVID-19 Symptoms Seen in Children with SMA Type 1
SMA News Today’s multimedia associate, Price Wooldridge, discusses more severe COVID-19 symptoms being seen in children with Spinal Muscular Atrophy (SMA) Type 1. Also, vlogger and forums moderator DeAnn Runge talks about her upcoming Dose of DeAnn vlog where she ventures out of what she refers to as hibernation. She shares where she went and why she decided to go as well as encourages viewers...
7m Feb 05, 2021
7m
Better Ways of Capturing Progression in Types 2 and 3 Identified in Study
SMA News Today’s multimedia associate, Price Wooldridge, discusses better ways of capturing progression of motor abilities in Spinal Muscular Atrophy (SMA) Types 2 and 3. Forums Director Kevin Schaefer talks about the struggles of being a disabled extrovert during a pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10m Feb 03, 2021
10m
#75: Alvaro Cheherlian, Founder and CEO of Wrekt Svpply
In episode 75, host Kevin Schaefer talks with Alvaro Cheherlian from Sylmar, California. Alvaro is the founder and CEO of Wrekt Svpply, a clothing brand company. He talks about building his business, growing up with SMA Type 2, and his love for coffee and heavy metal. Also, Kevin and Alvaro take some time to geek out on movies and Marvel television. ================================ Link to Al...
39m Feb 02, 2021
39m
Cure SMA Booklet Outlines Possible Risks, Benefits of Combining Treatments
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Cure SMA booklet which outlines the possible risks and benefits of combining treatments for Spinal Muscular Atrophy (SMA). Also, several topics are being hashed over on the forums. Among them include breaking in a new wheelchair, frustrations with bureaucratic red tape, reflecting on being homebound for the last year, finding...
7m Feb 01, 2021
7m
TOPAZ Trial Results on Muscle Therapy Likely by June, Scholar Rock Says
SMA News Today’s multimedia associate, Price Wooldridge, discusses the TOPAZ trial results expected in June on a muscle-directed therapy for Spinal Muscular Atrophy (SMA). Plus, staying social during a pandemic isn’t easy. Cure SMA has found a way for the SMA community to connect during these difficult times. DeAnn Runge shares her experience with one of the adult online socials hosted by Cure...
6m Jan 29, 2021
6m
Resolutions, Mindsets and Emotions & Transitioning SMA Patients From Older To Newer Wheelchairs
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Halsey Blocher, From Where I Sit, “Advice From a Life Coach: Resolutions, Mindsets, and Emotions”. Forums Director Kevin Schaefer reads from an article on our HCP site about transitioning to a new wheelchair. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jan 27, 2021
8m
Online for 2021, Team Cure SMA Race Series Planning Variety of Events
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Team Cure SMA endurance race series moving online in the current pandemic, and expecting more people to join. Also, Vlogger and Forums Moderator, DeAnn Runge shares an overview of recent SMA News Today columns. She finds each of them relatable to her life living with SMA. Are you interested in learning more about spinal mu...
6m Jan 25, 2021
6m
Zolgensma Approved to Treat Young SMA Patients in Canada
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Spinraza Phase 4 trial to treat children who failed to respond to gene therapy. DeAnn Runge shares her experience obtaining her first dose of the Pfizer COVID vaccine. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jan 22, 2021
8m
Keeping Your Child with SMA in School During the Cold and Flu Season & Soaring With Hope
SMA News Today’s multimedia associate, Price Wooldridge, discusses strategies to keep your child with Spinal Muscular Atrophy (SMA) in school during the cold and flu season. Forums Director Kevin Schaefer reads the introductory column from our newest writer, Ari Anderson. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
9m Jan 20, 2021
9m
#74: Interview with Katie Napiwocki and Andy Rusch, Interabled Couple
In episode 74, host Kevin Schaefer talks with Katie Napiwocki and Andy Rusch from Mosinee, Wisconsin. Katie is a columnist for SMA News Today, and her partner Andy is also her primary caregiver. Listen to the story of how they met at MDA camp and learned about the nuances of being in an interabled relationship. ================================ Link to Katie’s column: https://smanewstoday.com/...
32m Jan 19, 2021
32m
New Cure SMA Webinar Series to Focus on Health, Wellness & Let's Talk About Sex and SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses the Cure SMA three-part webinar series on wellness topics for the Spinal Muscular Atrophy community. Typically a taboo topic, sex and SMA isn’t discussed often. Forum members and columnists have stepped up to the plate to open the discussion on dating and relationships, helping break the stigma that those with disabilities aren...
5m Jan 18, 2021
5m
Higher-dose Spinraza Trial Now Enrolling Part B After No Safety Issues Found
SMA News Today’s multimedia associate, Price Wooldridge, discusses a higher dose Spinraza trial now enrolling Part B after no safety issues were found. Also, DeAnn Runge shares her personal experience after switching from Spinraza to Evrysdi. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jan 15, 2021
8m
This Year, I Want to Be Brave & The Challenges That Come With Pursuing Independence
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, The Wolf Finally Frees Itself, “This Year, I Want to Be Brave”. Forums Director Kevin Schaefer talks about the challenges that come with pursuing independence and his goals for the future. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jan 13, 2021
8m
Informal SMA Caregivers Surveyed in Europe Report High Daily Burden & Relevant Topics On The Forums
SMA News Today’s multimedia associate, Price Wooldridge, discusses how non-professional caregivers who care for children with Spinal Muscular Atrophy (SMA) carry a high daily burden that negatively affects their lives. As the moderators return from holiday break the most relevant topics are being discussed on the forums. Recovering from spinal fusion surgery, going to a chiropractor, setting g...
10m Jan 11, 2021
10m
Zolgensma Linked in 3 Cases to Serious But Treatable Blood Disorder
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Zolgensma is linked in three cases to a serious but treatable blood disorder. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10m Jan 08, 2021
10m
Zolgensma Approved to Treat Young SMA Patients in Canada & Kidney Stone And a Trip To The ER
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgensma approval in Canada for the treatment of young Spinal Muscular Atrophy patients. Also, Forums Director Kevin Schaefer tells the story of a kidney stone and a trip to the ER during the holidays. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jan 06, 2021
8m
#73: Interview With Tyler Dykema, Artist and Musician with SMA
In episode 73, host Kevin Schaefer talks with Tyler Dykema from Grand Rapids, Michigan. Tyler is an artist, musician, and punk rock connoisseur who has SMA Type II. He talks in this episode about growing up with SMA, his artistic passions, concert accessibility, and more. Happy New Year! ================================ To learn more about Evrysdi, please visit www.ApprovedForSMA.com =======...
38m Jan 05, 2021
38m
Paramedian Injection Approach Found to Ease Spinraza Administration & Difficult On Getting Evrysdi
SMA News Today’s multimedia associate, Price Wooldridge, discusses administering Spinraza (nusinersen) via a paramedian injection to shorten procedure times and reduce adverse events. SMA News Today’s forums moderator, DeAnn Runge, discusses one of the most difficult aspects of living with a disability, which is navigating the healthcare system. Brianna Albers latest column, I Can’t Get Evrysd...
11m Jan 04, 2021
11m
Ella Has Fun While Sheltering at Home & Stepping Into a New Me in the Year Ahead
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Fun While Sheltering at Home. SMA News Today’s forums moderator, DeAnn Runge, reads Alyssa Silva’s recent column, Stepping Into a New Me in the Year Ahead, where she does just that. ================================ To learn more about Evrysdi, please visit www.Ap...
8m Jan 01, 2021
8m
Being An Uncle With SMA and How This Role Can Change One's Life
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Michael Casten, “Five Servings of Strength”, Ella Has Made Big Gains Since Diagnosis Day. SMA News Today’s Columnist and Forums Director, Kevin Schaefer, Kevin Schaefer reflects on being an uncle with SMA and how this role has changed his life. ================================ To learn more about Evrysdi, please vis...
9m Dec 30, 2020
9m
Smart Tech Is Integral to My Quality of Life & 2020 Highlights
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Brianna Albers, “The Wolf Finally Frees Itself”, Yes, Actually, Smart Tech Is Integral to My Quality of Life. SMA News Today’s forums moderator, DeAnn Runge, looks back at 2020, and shares some memorable highlights despite a pandemic throwing a wrench into everything. She encourages everyone to go after their goals an...
9m Dec 28, 2020
9m
Rising From the Ashes and Flying With Broken Wings & Finding My Voice In the Disability Community
SMA News Today’s multimedia associate, Price Wooldridge, reads a column by Hasley Blocher, “From Where I Sit”, Rising From the Ashes an Flying With Broken Wings. SMA News Today’s forums moderator, DeAnn Runge shares excerpts from Katie Napiwocki's recent column, Finding My Voice within the Disability Community, where she explores the concept of disability and how it relates to her life. =====...
7m Dec 25, 2020
7m
Financial Burden of SMA Much Higher Than Other Conditions & The Mental Benefits of Physical Therapy
SMA News Today’s multimedia associate, Price Wooldridge, discusses the higher financial burden on Spinal Muscular Atrophy (SMA) patients, compared to other conditions. SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from an article on our HCP site about the mental and emotional benefits of physical therapy. ================================ To learn more about Evrysdi, p...
12m Dec 23, 2020
12m
Measuring Neurological Impact of Polio Proves Useful in SMA, Study Reports
SMA News Today’s multimedia associate, Price Wooldridge, discusses how measuring the neurological impact of Polio proves useful in studying patients with Spinal Muscular Atrophy (SMA). SMA News Today’s forums moderator, DeAnn Runge, talks about an article that discusses the Paramedian approach for Spinraza injections. The option of Everysdi is also a hot topic. Since gatherings are out this ho...
11m Dec 21, 2020
11m
Genetic Analysis of Families Finds Novel Mutations in SMA & The Lack Of Privacy When Living With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses a genetic analysis of families with a member affected by Spinal Muscular Atrophy (SMA) which finds novel mutations in SMA patients. SMA News Today’s forums moderator, DeAnn Runge shares her experiences with the lack of privacy that can be an issue when you have SMA. ================================ To learn more about Evrysdi...
10m Dec 18, 2020
10m
Zolgensma-associated Liver Abnormalities Common but Manageable & I’m Disappointed, and That’s OK
SMA News Today’s multimedia associate, Price Wooldridge, discusses a study which finds Zolgensma-associated liver abnormalities are common but manageable in children with Spinal Muscular Atrophy (SMA). SMA News Today’s Columnist and Forums Director, Kevin Schaefer, reads from Brianna Albers’ column about facing disappointment during the holiday season. ================================ To lea...
12m Dec 16, 2020
12m
#72: Evrysdi, Physical and Mental Health, and Highlights of 2020
In episode 72, Kevin Schaefer and Michael Morale reflect on the craziness of 2020, and they highlight some of the key pieces of content SMA News Today created this year. They also discuss Michael’s ongoing Evrysdi treatments, and share tips for improving one’s mental and physical health. ================================ Link to DeAnn’s videos: https://www.youtube.com/playlist?list=PLtRCVbeiSo...
48m Dec 15, 2020
48m
Neurological Alliance Report Calls for Better Treatment, Care for UK Patients
SMA News Today’s multimedia associate, Price Wooldridge, discusses a Neurological Alliance report calling for better treatment and care of U.K. patients living with rare neurological conditions such as Spinal Muscular Atrophy (SMA). SMA News Today’s forums moderator, DeAnn Runge discusses an article written by Alyssa Silva. She talks about how Alyssa had doubts about her ability to start a sma...
8m Dec 14, 2020
8m
Spinraza Linked to Temporary Abnormalities in Immune Cells in 2 SMA Infants
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza is linked to temporary abornalities in immune cells in two Spinal Muscular Atrophy (SMA) infants. SMA News Today’s forums moderator, DeAnn Runge talks about how the process is going adjusting to her new wheelchair. ================================ To learn more about Evrysdi, please visit www.ApprovedForSMA.com ...
9m Dec 11, 2020
9m