Quality of Life Survey Aims to Help Inform SMA Community Needs & Situations That Could’ve Gone Wrong
SMA News Today’s multimedia associate, Price Wooldridge, reads the SMA News Today article, “New Quality of Life Survey Aims to Help Inform SMA Community Needs”. Also, over on the forums there was just a conversation talking about situations that could’ve ended badly. Ari Anderson’s timely column, “Learning to Laugh and Heal After Facing Danger,” points out a lighthearted approach can be much n...
9m Oct 21, 2021
9m
#92: Discussing Disability and Employment
In episode 92, host Kevin Schaefer talks with fellow SMA News Today contributors to discuss each other’s work experiences. October is recognized in the United States as National Disability Employment Awareness Month (NDEAM). Listen as Kevin talks with DeAnn Runge, Michael Morale, and Alyssa Silva about the nuances of working with a disability, finding jobs, and maintaining disability benefits ...
48m Oct 19, 2021
48m
Pre-symptomatic Infants Retain Swallowing Ability in Evrysdi Trial
SMA News Today’s multimedia associate, Price Wooldridge, reads an article on how pre-symptomatic infants with SMA have retained the ability to swallow after being treated with Evrysdi for at least one year in a clinical trial. Also, October is National Disability Employment Awareness Month (NDEAM.) As such it got DeAnn thinking about one of her first jobs and how she obtained it. Employment op...
6m Oct 18, 2021
6m
Spinraza RESPOND Trial Enrolling Children Not Helped by Zolgensma
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) children not helped by Zolgensma, are being enrolled in the Spinraza RESPOND trial. Plus, usually Kevin Schaefer reads his own columns, but today DeAnn Runge has the opportunity to share his latest column. Titled, “Embracing a New Chapter in Life With SMA,” Kevin writes about his longtime careg...
30s Oct 14, 2021
30s
Low Bone Density Puts SMA Children in China at Risk for Fractures & DeAnn Runge's Favorite Hobbies
SMA News Today’s multimedia associate, Price Wooldridge, discusses how low bone density puts Spinal Muscular Atrophy (SMA) children in China at risk for fractures. Plus, DeAnn Runge talks about one of her favorite hobbies. She shares what made it possible for her to accomplish it in the first place. Because of unforeseen circumstances along with her disability progression she’s contemplating g...
10m Oct 11, 2021
10m
Certain Abilities Decline in SMA Children Unable to Walk & Gaming to Find Accessibility
SMA News Today’s multimedia associate, Price Wooldridge, discusses how certain abilities decline in Spinal Muscular Atrophy (SMA) children who are unable to walk. In a world that can be less than accessible it’s only natural to gravitate towards something that provides some semblance of inclusion. Read by DeAnn Runge, Sherry Toh’s recent column, “The Possibility of Radical Accessibility Is Here...
14m Oct 07, 2021
14m
#91: Blake Watson, Web Designer and Developer
In episode 91, host Kevin Schaefer talks with Blake Watson from Byram, Mississippi. Blake is a web designer and developer. He is currently a member of the frontend dev team at MRI Technologies, working on projects for NASA. He has SMA Type II and is passionate about helping disabled individuals find employment. ================================ Blake’s website: https://blakewatson.com Blake’s...
42m Oct 05, 2021
42m
Trial of Spinraza at High Dose for Patients Who Have Used Evrysdi & Dealing With Your Period
SMA News Today’s multimedia associate, Price Wooldridge, discusses a trial planned of Spinraza at high dose in Spinal Muscular Atrophy (SMA) patients who have used Evrysdi. Read the news article: https://smanewstoday.com/news-posts/2021/09/17/high-dose-spinraza-trial-sma-patients-using-evrysdi/ DeAnn Runge doesn’t shy away from personal topics especially when she feels others can relate or off...
9m Oct 04, 2021
9m
Blood NfL Levels May Mark SMA Severity, Therapy Efficacy in Very Young
SMA News Today’s multimedia associate, Price Wooldridge, discusses how blood neurofilament light chain (NfL) levels may mark Spinal Muscular Atrophy (SMA) severity and therapy efficacy. Although she finds travel difficult for herself, DeAnn Runge loves to hear about others adventures. Today she reads Halsey Blocher’s column, “Vacationing With SMA as Your Travel Companion,” where she shares abo...
14m Sep 30, 2021
14m
Variant in Androgen Receptor Might Be Useful in Treating SBMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses a variant of an androgen receptor protein which may be useful in treating Spinal and Bulbar Muscular Atrophy (SBMA). Also, on what could possibly be the last nice day of the season, DeAnn Runge heads out on an adventure with her mom. She talks about what aspects were fun and also some challenges they faced throughout the day. ...
9m Sep 27, 2021
9m
Cure SMA And Cytokinetics Renew Joint Efforts to Raise Funds and Awareness
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Cure SMA and Cytokinetics renew their joint efforts to raise funds and awareness for Spinal Muscular Atrophy (SMA). Also, DeAnn Runge reads Alyssa Silva’s latest column where she shares about a positive interaction with a child. Odds are that if you’re in a wheelchair you’ve been stared at, or even shied away from. It can b...
9m Sep 23, 2021
9m
#90: Interview With Judy Heumann, Disability Rights Activist
In episode 90, host Kevin Schaefer talks with Judy Heumann, who’s originally from Brooklyn, New York. A pioneer of the disability rights movement, she is one of the primary subjects of the 2020 Netflix documentary Crip Camp. In the United States, she served in the administrations of Presidents Bill Clinton and Barack Obama. In 2020, she published her memoir Being Heumann: An Unrepentant Memoir...
42m Sep 21, 2021
42m
SMA Caused by Mutation in ASAH1 Gene Reported in Romania
SMA News Today’s multimedia associate, Price Wooldridge, discusses a first-ever case in Romania of Spinal Muscular Atrophy (SMA) caused by a mutation in the ASAH1 gene. Plus, DeAnn Runge talks about a topic that’s keeping her up at night. She’s concerned she could lose 75% of her caregivers. She also shares about her next vlog regarding her views on SMA treatment effectiveness. Are you intere...
8m Sep 20, 2021
8m
2 SMN2-targeting Therapies Work Better Than 1 in Mouse Model
SMA News Today’s multimedia associate, Price Wooldridge, discusses how, according to a mouse model, two SMN 2 targeting therapies work better than one. Also, heading into the weekend, DeAnn Runge wanted to share Brianna Albers’ latest column, “Today and Every Day, I Choose Rest.” Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
13m Sep 16, 2021
13m
Indigenous Groups in Canada May Have Highest Rate of SBMA in World
SMA News Today’s multimedia associate, Price Wooldridge, discusses indigenous groups in Canada having the highest rate of spinal and bulbar muscular atrophy (SBMA) in the world. DeAnn Runge talks about how a recent news story regarding the Miami International Airport installing wheelchair charging stations got under her skin. She points out how difficult air travel is for the disabled communit...
9m Sep 13, 2021
9m
Mothers Want to Improve Children’s Quality of Life & Making Friends as an Adult With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how mothers of Spinal Muscular Atrophy (SMA) children and adolescents what to improve their children’s quality of life. DeAnn Runge reads a column by Alyssa Silva that she relates to on many levels. It’s titled, “The Challenges of Making Friends as an Adult With SMA.” Are you interested in learning more about spinal muscular a...
12m Sep 09, 2021
12m
#89: Interview with Carole St-Laurent, A Children’s Author With SMA
In episode 89, host Kevin Schaefer talks with Carole St-Laurent from Quebec, Rimouski. Carole is the author of multiple children’s books, for which she writes under the name Rainbow Gal. She talks about her artistic career and past life as a musician, living with SMA, and her experiences with traveling and living independently. ================================ Carole’s website: http://Rainbow...
45m Sep 07, 2021
45m
$1M Raised for ‘SpawnTogether,’ Disabled Gamers Project & DeAnn's Jaco Robotic Arm
SMA News Today’s multimedia associate, Price Wooldridge, discusses how $1 million has been raised by a Spinal Muscular Atrophy (SMA) patient for a disabled gamers project. Also, DeAnn Runge talks about her latest Dose of DeAnn vlog where she reveals her Jaco Robotic Arm. She shows you what the installation process is like, and what she can do with it. Are you interested in learning more about...
6m Sep 06, 2021
6m
Some SMA Patients Unable to Walk Unassisted May Have Trouble Chewing
SMA News Today’s multimedia associate, Price Wooldridge, discusses how some Spinal Muscular Atrophy (SMA) patients unable to walk unassisted may have trouble chewing. And to close out SMA Awareness Month, DeAnn Runge shares the final few stories from the 31 Days of SMA campaign. She goes on to remind everyone that just because the month is over it doesn’t mean SMA goes away. Continue sharing s...
9m Sep 02, 2021
9m
Behind-the-Scenes of #31DaysofSMA
#InstagramLive​ here: https://www.instagram.com/tv/CTBDgwbBFm5/ Ally Macgregor chats with Kevin Schaefer (@kevinschaefer19), Katie Napiwocki (@wheelprintsalongthewildflowers) and Samantha Przybylski (@smasammysue) about the 31 Days of SMA campaign, personal storytelling and disability advocacy. You can watch this conversation again, here. Also, don't forget to check us out and follow us on so...
50m Aug 31, 2021
50m
SMA UK Network Helps Patients Navigate Adulthood
SMA News Today’s multimedia associate, Price Wooldridge, discusses an SMA UK network which helps patients navigate adulthood, living longer, attending college, pursuing careers, and traveling more. Also, having what she considers a significant disability DeAnn Runge finds life in general can be little daunting. That's why she goes by her motto, focus on what you can do not on what you can't. S...
9m Aug 30, 2021
9m
Most Parents Surveyed in Japan Support SMA Newborn Screening
SMA News Today’s multimedia associate, Price Wooldridge, discusses newborn screening for Spinal Muscular Atrophy (SMA) in Japan and it’s support by most parents surveyed. Plus, not only does the 31 Days of SMA campaign highlight some amazing people, it also sheds light on what needs to change in our communities. Acceptance, attitude and overcoming obstacles are also themes that run throughout ...
11m Aug 27, 2021
11m
SMA Type 1 Affects Sensory Nerves as Children Age, Small Study Shows
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) Type 1 affects sensory nerves as children age. Plus, Kevin Schaefer reads a column by Ari Anderson about being thankful instead of being envious. Link to Ari’s column: https://smanewstoday.com/columns/2021/08/19/learning-be-thankful-instead-envious/ To learn more about spinal muscular atrophy...
10m Aug 25, 2021
10m
‘Best Possible Outcome’ for SMA? Newborn Screening, Then Zolgensma
SMA News Today’s multimedia associate, Price Wooldridge, discusses the best possible outcome for infants with Spinal Muscular Atrophy (SMA) is newborn screening, then Zolgensma, according to a cost-effectiveness study in Australia Also, content creator DeAnn Runge talks about getting her Jaco Robotic arm. She shares her concerns and the adjustments she’s had to make after receiving it. Despite...
10m Aug 23, 2021
10m
Zolgensma Helps Mobility of SMA Children in Qatari Real-world Study
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the gene therapy Zolgensma helps improve mobility in young children with Spinal Muscular Atrophy (SMA) in a real-world study. Also, as August is beyond half over several stories have been featured in the 31 Days of SMA campaign. Here are a handful of the most recent ones. Are you interested in learning more about spinal mu...
10m Aug 20, 2021
10m
FDA Lifts Hold on Clinical Trials of Intrathecal OAV-101 & Self-Acceptance and Rejecting Ableism
SMA News Today’s multimedia associate, Price Wooldridge, discusses the FDA lifting its partial hold on clinical trials of Intrathecal OAV-101 for the treatment of Spinal Muscular Atrophy (SMA). Also, forums Director Kevin Schaefer reads a story from our 31 Days of SMA series. This piece, written by Tristram Peters, is about self-acceptance and rejecting ableism. Link to 31 Days of SMA series:...
7m Aug 18, 2021
7m
#88: SMA Awareness Month & 31 Days of SMA 2021
In episode 88, host Kevin Schaefer talks with fellow SMA News Today contributors Michael Morale and Katie Napiwocki. They discuss this year’s 31 Days of SMA campaign, as well as other topics and news stories related to SMA Awareness Month. Finally, they highlight some recent columns from our main website. ================================ Links to 31 Days of SMA campaign and news stories: - 3...
47m Aug 17, 2021
47m
Zolgensma-Evrysdi Combo Likely Beneficial for SMA Type 1
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the Zolgensma-Evrysdi combination is likely beneficial for patients with Spinal Muscular Atrophy (SMA) Type 1. Also, DeAnn Runge shares about the stress and anxiety that come along with verifying disability eligibility. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewsto...
9m Aug 16, 2021
9m
Inviting People to Sit at the Table of My Disabled Life & 31 Days of SMA Thus Far
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Katie Napiwocki, A Wildflower in the Wheelderness, “Inviting People to Sit at the Table of My Disabled Life”. Also, as the 31 Days of SMA continues SMA News Today has featured some fabulous stories with more to come. DeAnn shares a brief synopsis of some of the most recent featured contributions. Are you interested i...
10m Aug 13, 2021
10m
Muscular Dystrophy Canada Funds Projects on Newborn SMA Screening
SMA News Today’s multimedia associate, Price Wooldridge, discusses the award of funds by Muscular Dystrophy Canada for Spinal Muscular Atrophy (SMA) newborn screening. Also, Kevin Schaefer reads a column about the concept of SMA Pride and disability language. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
9m Aug 11, 2021
9m
Spinraza Improves Lung Function in SMA Type 2 Child, Report Says
SMA News Today’s multimedia associate, Price Wooldridge, discusses improved lung function with Spinraza in a Spinal Muscular Atrophy (SMA) Type 2 child. Also, As DeAnn Runge awaits the arrival of her Jaco Robotic Arm she’s doing some last minute cleaning. She even found a way to personalize her chair. Are you interested in learning more about spinal muscular atrophy? If so, please visit https...
7m Aug 09, 2021
7m
Why My Journey With Disability Pride Isn’t Linear & 31 Days of SMA Initiative
SMA News Today’s multimedia associate, Price Wooldridge, reads the column by Alyssa Silva, Life, One Cup at a Time, “Why My Journey With Disability Pride Isn’t Linear”. Also, in recognition of SMA Awareness Month, SMA News Today features the wonderful initiative called 31 Days of SMA. Each day in August a story is featured of someone whose life has been touched by SMA. DeAnn Runge gives a brie...
8m Aug 06, 2021
8m
Novartis Stopping Work on Branaplam as Oral SMA Therapy & 31 Days of SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses Novartis stopping work on the development of Branaplam as an oral treatment for Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer reads a story from our 31 Days of SMA series. This piece, written by Alvaro Cheherlian, is about being an entrepreneur with SMA. Link to 31 Days of SMA series: https://smanewstoday.com/c...
7m Aug 04, 2021
7m
#87: Interviews with Allie Williams, Vocal Coach and Disability Advocate
In episode 87, host Kevin Schaefer talks with Allie Williams from Stillwater, Oklahoma. Allie is a vocal coach and she has SMA Type II. She talks about her lifelong musical journey, dealing with accessibility issues as a college student, and advice she has for others with SMA. ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ===========...
42m Aug 03, 2021
42m
Early Work Supports Apitegromab’s Safety as SMA Muscle Therapy & Jaco Robotic Arm Approval
SMA News Today’s multimedia associate, Price Wooldridge, discusses early work that supports Apitegromab’s safety as a Spinal Muscular Atrophy (SMA) therapy. Also, after a yearlong battle DeAnn Runge learns she’s been approved to receive the Jaco Robotic Arm. She reflects on the process and shares the emotions that come along with it. Are you interested in learning more about spinal muscular a...
10m Aug 02, 2021
10m
SadBaby Crowdfunding Aims to Help SMA Families & Accessibility, Disability Pride and Success
SMA News Today’s multimedia associate, Price Wooldridge, discusses SadBaby, an organization raising donations to support children with Spinal Muscular Atrophy (SMA). Also, SMA News Today content creator DeAnn Runge gives a snapshot of the columnists at SMA News Today and their recent contributions. Topics range from relationships with others to the relationship with ones SMA body. Accessibilit...
7m Jul 30, 2021
7m
Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds
SMA News Today’s multimedia associate, Price Wooldridge, discusses a partnership which aims to lower out-of-pocket costs for rare disease medications. Also, Forums Director Kevin Schaefer reads a column by Sherry Toh about her love for video games. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
10m Jul 28, 2021
10m
‘Wearable Cyborg’ Helps Improve Walking Ability And Muscle Strength
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a wearable cybernetic leg significantly improves walking ability for people with neuromuscular disabilities such as Spinal Muscular Atrophy (SMA). Also, DeAnn Runge shares stories that could be considered inspiration porn although she views them as inspirational because they serve a purpose. Are you interested in learning ...
8m Jul 26, 2021
8m
VRK1 Mutations Were Found in Two Adult-Onset SMA Hispanics & the SSI Restoration Act of 2021
SMA News Today’s multimedia associate, Price Wooldridge, discusses how VRK1 mutations were found in two adult-onset Spinal Muscular Atrophy (SMA) Hispanics. In the forums there are a lot of great discussions going on. A topic creating a lot of buzz is the SSI Restoration Act of 2021. July being Disability Pride month is another topic with a lot of interest. Other topics include disability portr...
10m Jul 23, 2021
10m
COVID-19 Infection Turns Severe in SMA Type 1 Child & Treating Your Body Right
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a COVID-19 infection turns severe in a Spinal Muscular Atrophy (SMA) Type 1 child. News article: https://smanewstoday.com/news-posts/2021/07/14/covid-19-severe-fatal-inflammation-sma-type-1-child/ Forums Director Kevin Schaefer reads a column by Ari Anderson about treating your body right. Link to Ari’s column: https://sman...
10m Jul 21, 2021
10m
#86: Price Wooldridge, The Voice Behind the SMA Flash Briefings
#86: Price Wooldridge, The Voice Behind the SMA Flash Briefings by SMA News Today
40m Jul 20, 2021
40m
Sma Treatment May Be More Effective by Altering an Underlying Molecule & Having a Service Dog
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) treatment may be more effective by altering an underlying molecule. DeAnn Runge shares what having a service dog entails. She just completed her Public Access Recertification and details how it was different from years past. Are you interested in learning more about spinal muscular atrophy? If...
7m Jul 19, 2021
7m
Spinraza Improves Motor Function in Children And Adults With SMA Type 3 Children
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in Spinal Muscular Atrophy (SMA) Type 3 children. In recognition of Disability Pride Month, DeAnn Runge reads the column ‘All of Us Will Become Disabled and Sick’ by Brianna Albers. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
14m Jul 16, 2021
14m
Stem Cell Therapy May Benefit Some Type 1 Infants & Disability Pride Month
SMA News Today’s multimedia associate, Price Wooldridge, discusses a stem cell therapy which may benefit some Spinal Muscular Atrophy (SMA) Type 1 infants. Also, Kevin Schaefer shares his thoughts on Disability Pride Month. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jul 14, 2021
8m
People in UK Urged to Sign Petition Adding SMA to Newborn Screening
SMA News Today’s multimedia associate, Price Wooldridge, discusses the UK SMA Newborn Screening Alliance calling on people to take action and sign a petition requesting Spinal Muscular Atrophy (SMA) be added to newborn screening. Also, DeAnn Runge talks about their recent van troubles and the extra complexity disability adds to the situation. Are you interested in learning more about spinal m...
8m Jul 12, 2021
8m
US Pediatricians Often Overlook Steps in Diagnosing SMA, Surveys Show
SMA News Today’s multimedia associate, Price Wooldridge, discusses how many U.S. pediatricians fail to use developmental screening tools in diagnosing Spinal Muscular Atrophy (SMA). Plus, DeAnn Runge shares a recent article by Halsey Blocher, “The Evolution of Adult Programs at the Cure SMA Conference.” Halsey reminisces on past conferences and talks about how and why the programs have evolved...
14m Jul 09, 2021
14m
Texas Adds SMA to Its Newborn Screening Program
SMA News Today’s multimedia associate, Price Wooldridge, discusses Texas adding Spinal Muscular Atrophy (SMA) to its newborn screening program. Also, Forums Director Kevin Schaefer reads a column about making churches more accessible. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
8m Jul 07, 2021
8m
#85: Interview With Mikey and Noelle Hazel, Siblings with SMA
In episode 85, host Kevin Schaefer talks with Mikey and Noelle Hazel from Union, New Jersey. Mikey and Noelle are siblings who both have SMA Type II. They talk about growing up with SMA together, combating ableism, and entering a new chapter in their lives. ================================ Link to Mikey’s YouTube Channel: https://www.youtube.com/channel/UCNx-ePIR4bO2tPKCSfPb9fQ =============...
56m Jul 06, 2021
56m
Japan Approves Evrysdi as First At-home, Oral SMA Treatment
SMA News Today’s multimedia associate, Price Wooldridge, discusses Japan’s approval of Evrysdi as the first at-home, oral Spinal Muscular Atrophy (SMA) treatment. Also, DeAnn Runge talks about her quest to start pool therapy and the challenges she’s faced with. It’s just not as easy as dipping your toe in the water. Are you interested in learning more about spinal muscular atrophy? If so, ple...
7m Jul 05, 2021
7m
Major Developmental Milestones Met in Infants, Zolgensma Data Show
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgensma treatment demonstrating major milestones being met in infants with Spinal Muscular Atrophy (SMA). Also, DeAnn shares with you Alyssa’s latest column, “Actually, My Disease Does Define Me,” where she talks about the influence SMA has had on her life. Are you interested in learning more about spinal muscular atrophy? I...
12m Jul 02, 2021
12m