#108: A Mother Discusses the Approval of Evrysdi for Infants With SMA
In episode 108, host Kevin Schaefer talks with Logan Nantz from southern Indiana. Logan’s daughter Hayden is two years old and has SMA. They discuss Logan family’s story, as well as the news that Genentech recently approved Evrysdi for infants under the age of two months. ================================ Evrysdi story: https://smanewstoday.com/news-posts/2022/06/01/sma-treatment-evrysdi-gets-...
25m Jun 21, 2022
25m
#107: A Conversation About Mental Health With LGBTQ+ and Disability Advocates
In episode 107, host Kevin Schaefer talks about mental health with LGBTQ+ and disability advocates. Panelists include Ali Ramos (she/her), licensed social worker; Sherry Toh (she/they), columnist for SMA News Today; and Hugo Trevino (he/him), who works in academia. They all share their experiences managing their own mental health and offer advice for others in disability and LGBTQ+ spaces. ===...
47m Jun 07, 2022
47m
#106: A Conversation About Women’s Mental Health With Rare Disease and Disability Advocates
In episode 106, host Kevin Schaefer talks with a group of rare disease and disability advocates about women’s mental health. Panelists include Charlene Marshall, licensed mental health professional, and columnist for Pulmonary Fibrosis News; Brianna Albers, columnist for SMA News Today; Gabrielle Runyon, a college student with SMA at the University of Louisville; and Jessie Madrigal writer for ...
33m May 17, 2022
33m
#105: A Conversation About Men’s Mental Health With Rare Disease and Disability Advocates
In episode 105, host Kevin Schaefer talks with rare disease and disability advocates about men’s mental health. Panelists include Paris Dancy, licensed mental health professional, and columnist for Cushing’s Disease News; Matt Lafleur, columnist for Friedreich’s Ataxia News; Michael Morale, multimedia specialist for SMA News Today; and Ty Dykema, artist and disability advocate. They all share t...
55m May 03, 2022
55m
#104: Interview With Ben Lou, Mathematics Student With SMA
In episode 104, host Kevin Schaefer talks with Ben Lou from San Diego, California. Ben is a student at MIT, planning to double major in math and physics. He discusses his lifelong love for learning, growing up with SMA, and the importance of disability representation in STEM education. ================================ Article about Ben: https://smanewstoday.com/news-posts/2021/10/11/sma-ben-l...
33m Apr 19, 2022
33m
#103: Discussion on Clinical Trials and Advocacy
In episode 103, host Kevin Schaefer talks with Stephen Mikita and Arya Singh, two individuals with SMA who have years of experience with clinical trials. Stephen, 66, was an Assistant Attorney General for the state of Utah for more than 30 years, representing the three largest state agencies providing services and protections for individuals with disabilities. As one of the oldest survivors of...
42m Apr 05, 2022
42m
#102: Interview with Amber-Joi Watkins, SMA Mom and Advocate
In this episode, host Kevin Schaefer talks to Amber-Joi Watkins, an SMA mom and advocate. Amber-Joi talks about raising her daughter, Celine, and becoming part of the SMA community. She also discusses her daughter’s treatment journey, their daily lives, and shares some advice she has for other parents. ================================ To learn more about Evrysdi, please visit http://www.Appro...
32m Mar 15, 2022
32m
Using Ultrasound May Help in SBMA Diagnosis & Dealing With Hospital Stays
SMA News Today’s multimedia associate, Price Wooldridge, discusses how men with spinal and bulbar muscular atrophy (SBMA) had abnormally small nerves in the limbs, especially the arms, as measured by ultrasound. Alyssa Silva’s recent post about her hospital stay has DeAnn thinking about her own time in the hospital. Find out what about SMA caught her off guard and how she dealt with it. Are y...
9m Mar 02, 2022
9m
#101: Interview with John Milligan, Asuragen Scientist & SMA Testing Expert
In this episode, host Kevin Schaefer talks with John Milligan from Austin, Texas. John is a Senior Manager in RND at Asuragen, a biotechnology company. They chat about the state of SMA testing, newborn screenings, the evolution of SMA research, and his day-to-day life. ================================ Learn more about Asuragen: https://asuragen.com/ ================================ To learn...
29m Mar 01, 2022
29m
SMA Screening Now Available to 87% of Newborns in US & Olympics Lacked Disability Representation
SMA News Today’s multimedia associate, Price Wooldridge, discusses how screening for spinal muscular atrophy is now available to 87% of all newborns in the United States, according to Cure SMA. After noticing the lack of disability representation during the Olympic Opening Ceremony, DeAnn decided to post about. She shares her views and how she was surprised by the response from her post on the...
8m Feb 23, 2022
8m
Evrysdi for Infants Under 2 Months Old Given FDA Priority Review & Adapting to a New Wheelchair
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the FDA is reviewing a request that the use of Evrysdi, an oral and at-home SMA treatment, be extended to pre-symptomatic babies. Also, although exciting, getting a new wheelchair isn’t always easy. DeAnn can relate to columnist Brianna Albers recent article, “A Year Later, I’m Still Wearing Old Shoes.” She goes into detail...
11m Feb 16, 2022
11m
#100: Interview with Gabrielle Runyon, College Student with SMA and Disability Advocate
In episode 100, host Kevin Schaefer talks with Gabrielle Runyon (she/her) from Louisville, Kentucky. Gabrielle is a sophomore at the University of Louisville, studying psychology. She talks about growing up with SMA, transitioning to college, and advocating for disabled individuals. ================================ Gabrielle’s 31 Days of SMA Story: https://smanewstoday.com/31-days-of-sma/2020...
39m Feb 15, 2022
39m
SMA Linked to “Significant” Economic Burden
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a "significant" burden in direct and indirect costs is evident in caring for people with spinal muscular atrophy, a large review study finds. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.
11m Feb 07, 2022
11m
Therapy Effectively Treats SMA in Mice With Evident Symptoms & Tackling New Challenges With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how scientists gave a new, noninvasive type of antisense oligonucleotide therapy to symptomatic SMA mice and saw promising results. Also, with a condition like SMA it can be easy to become overwhelmed. In Alyssa’s latest column she writes about that feeling and how challenging herself in other areas of her life help her cope wi...
13m Feb 03, 2022
13m
#99: SMA and Motherhood
In episode 99, host Kevin Schaefer talks with two mothers from the SMA community. Trudy Citovic lives in Oregon, and her daughter Alina has SMA. As an advocate for newborn screenings, she talks about the role SMA has played in her experience of motherhood. Carli Hamilton is a social media influencer and mother who has SMA. She lives in Utah with her husband and daughter. She shares her thought...
1hr 2m Feb 01, 2022
1hr 2m
Spinraza Plus Zolgensma Offers Little Extra Benefit in Type 1, Study Suggests
SMA News Today’s multimedia associate, Price Wooldridge, reads an article about how a small group of children given the gene therapy after Spinraza's start showed only slight further gains; early treatment most important. Also, in her latest vlog DeAnn Runge explores the topic of furry friends. Pets are an important aspect of her life. She explains how she feels pets can benefit the lives of a...
7m Jan 31, 2022
7m
Spine Surgery Effective in SMA Type 1 Children & Mentally Preparing For Surgery
SMA News Today’s multimedia associate, Price Wooldridge, discusses how surgery to correct kyphoscoliosis — an abnormal curvature of the spine found in children with SMA type 1 — also allows Spinraza treatment. As Ari Anderson prepares himself for upcoming surgery, he looks for a suitable mantra to help get him through the fight ahead. In his recent article, “Preparing for Surgery, I Search for...
12m Jan 27, 2022
12m
Wheelchair Hockey Linked to Physical, Psychological Gains & Preserving Privacy When Living with SMA
SMA News Today’s multimedia associate, Price Wooldridge, reads an article about how men with spinal muscular atrophy or Duchenne muscular dystrophy who played wheelchair hockey showed quality of life gains relative to others. Alos, when you rely on others for personal cares, maintaining privacy can be difficult. DeAnn Runge talks about a situation that arose that has her questioning the level ...
10m Jan 24, 2022
10m
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 o...
13m Jan 20, 2022
13m
#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. ================================ Join the conversation about care...
58m Jan 18, 2022
58m
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 t...
8m Jan 17, 2022
8m
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...
12m Jan 13, 2022
12m
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....
11m Jan 10, 2022
11m
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 ...
10m Jan 06, 2022
10m
#97: Interview with Ali Ramos, a Social Worker and Disability and LGBTQ+ Activist.
In episode 97, host Kevin Schaefer talks with Ali Ramos (she/her) from Amarillo, Texas. Ali is a licensed social worker and activist, focusing on both the disability and LGBTQ communities. She talks with Kevin about living with SMA, pursuing independence, and her advocacy work. ================================ Ali’s Instagram: https://www.instagram.com/kittylegs/ Ali’s Facebook page: https:/...
35m Jan 04, 2022
35m
Spinraza Delays Do Not Directly Affect Children in Italy & Making Goals with SMA
SMA News Today’s multimedia associate, Price Wooldridge, reads a news article on how the delays in Spinraza treatment due to the COVID-19 pandemic did not directly result in worsening symptoms in children, a study in Italy says. Also, after reflecting on 2021, DeAnn shares what her plans are for 2022. Although she doesn’t make resolutions, she’s made goals and explains what they mean to her. ...
11m Jan 03, 2022
11m
Saliva Samples May Help Diagnose SMA & Moving Into a New Home with SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study showed for the first time that genetic analysis of dried saliva spots correctly identified people with spinal muscular atrophy. Also, when you have SMA there are additional aspects to consider when doing things like moving into a new house. Halsey Blocher references some of these challenges in her article, “Giving T...
12m Dec 30, 2021
12m
Poor Spinraza Adherence Leads to More Illness, Healthcare Costs & December Can Be Bittersweet
SMA News Today’s multimedia associate, Price Wooldridge, discusses how not having Spinraza therapy as prescribed – called treatment non-adherence – increases overall costs and healthcare use for SMA patients. Also, DeAnn Runge shares why December is a bittersweet time of the year. Despite that she’s looking forward to the upcoming year. Are you interested in learning more about spinal muscula...
12m Dec 27, 2021
12m
Treatment Delays May Be Less Important Than Family Support & Cherishing Togetherness During Holidays
SMA News Today’s multimedia associate, Price Wooldridge, discusses how delays of Spinraza treatment due to COVID-19 seem to affect children's function less than weaker family support, small study found. Plus, togetherness is something Alyssa Silva looks forward to during the holiday season. In her latest SMA News Today column, “Cherishing Togetherness During the Holidays,” she shares some of t...
9m Dec 23, 2021
9m
Phase 3 Trial of Apitegromab on Track for This Year & Managing Technological Issues With SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses Scholar Rock plans to initiate a pivotal trial of its muscle-targeted therapy in non-ambulatory spinal muscular atrophy patients in 2021. Technology is something DeAnn relies on to live independently. When it isn’t functioning properly it can be a hassle. DeAnn talks about issues she’s having with her internet and what she must...
7m Dec 20, 2021
7m
Neurofilaments and Nerve-muscle Test Show SMA Severity & SMA Adults Struggle to Access Evrysdi
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how blood levels of neurofilaments and the results of a nerve-muscle test may be biomarkers for SMA onset/severity and treatment response. Also, Sherry Toh’s SMA News Today article, “As an Adult With SMA, I Need Access to Evrysdi, Too,” pulls at your heartstrings. DeAnn can relate to those feelings as it remind...
14m Dec 16, 2021
14m
#96: Chat with SMA Columnist Halsey Blocher and her Mother & Caregiver, Heather Dye
In this episode, host Kevin Schaefer talks with Halsey Blocher and Heather Dye from Fort Wayne, Indiana. Halsey is a columnist for SMA News Today, and her mother Heather is a caregiver and advocate. During this conversation, they talk about the nuances of living with SMA, transitioning to adulthood, and advice they have for others in the SMA community. ================================ Halsey’...
35m Dec 14, 2021
35m
Novartis Applauds Move to Reimburse Families for Zolgensma & Making Connections with SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Novartis Pharmaceuticals Canada applauds the province of Quebec for its move to offer public reimbursement for the SMA gene therapy Zolgensma. Also, making meaningful connections has become difficult for DeAnn Runge over the past several years. She explains why that is and shares some of her recent experiences. Are you int...
7m Dec 13, 2021
7m
Acute Liver Failure Warning Added to Zolgensma Label & Time Management and SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the U.S. FDA has added acute liver failure to the list of concerns with use of Zolgensma in children with spinal muscular atrophy. Plus, the value of time can be a difficult concept to master. In Ari Anderson’s recent article, “Time Is a Balancing Act, Let’s Learn How to Do It Together,” he talks about the value of time and...
9m Dec 09, 2021
9m
Oral SMA Therapy Is Ideal and Aids Motor Skills and Breathing & Why No Changes in SMA is Good
SMA News Today’s multimedia associate, Price Wooldridge, discusses how better/stable motor function and breathing, along with oral use, is ranked high in a UK survey of SMA type 2 and 3 adult patients, caregivers. Plus, after completing her annual neurology visit and assessments DeAnn talks about why no change is a good thing where SMA is concerned. She gives an update on where she’s at in her...
11m Dec 06, 2021
11m
TXA Reduces Blood Loss During Scoliosis Surgery & Taking A Break For Emotional Wellness
SMA News Today’s multimedia associate, Price Wooldridge discusses how a recent study found that Tranexamic acid effectively reduced blood loss by over 50% during surgery to correct scoliosis due to spinal muscular atrophy. Also, we all know that self-reflection can be challenging. In Brianna Albers' latest article, she reflects on a reality that requires her to make a change. DeAnn Runge discu...
14m Dec 02, 2021
14m
#95: Interview with the SMA Creatives Behind "Spaces" Music Video
In episode 95, host Kevin Schaefer talks with the creators of the new song “Spaces.” Done in collaboration with Genentech, this production was created entirely by people from the SMA community. James Ian is a singer, songwriter, and actor from Los Angeles, California. With Spaces, he wanted to create a song specifically for the disability community. Dominick Evans is a trans, non-binary creat...
45m Dec 01, 2021
45m
Weak Trunk Muscles And Spine Problems Need Early Attention in SMA & The Human Side of the Internet
SMA News Today’s multimedia associate Price Wooldridge, discusses an article on how spinal deformities and weak trunk muscles put substantial limits on the functional abilities of SMA children and need to be addressed. Plus, DeAnn Runge knows all too well the downside of the internet. After all her Facebook account was just hijacked. That’s why she wants to share Kevin Schaefer’s recent articl...
11m Nov 29, 2021
11m
Clinical Trial to Test Antibody Use With Evrysdi & Thanksgiving Challenges
SMA News Today’s multimedia associate, Price Wooldridge, discusses how Roche and Genentech will initiate a Phase 2/3 clinical trial to evaluate the safety and efficacy of GYM329 in combination with Evrysdi in children with SMA. Also, after thinking this Thanksgiving would resemble some normalcy, Covid throws a wrench into DeAnn’s family plans. She explains why their plans have changed and her ...
6m Nov 25, 2021
6m
Organization Aims to Make Planes Wheelchair-Accessible & Dealing with Accessibility Issues at Home
SMA News Today’s multimedia associate, Price Wooldridge, discusses how All Wheels Up recently celebrated the release of a transportation review board study that showed the feasibility of accessible aircraft. Also, nothing’s ever easy, or so it seems for DeAnn Runge. She talks about the process to get a back door opener replaced and the challenges she faces while waiting for it. Are you intere...
14m Nov 22, 2021
14m
New Spinraza Delivery Technique for Patients & How To Refer to Someone With a Disability
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how administering Spinraza by subcutaneous intrathecal catheter improved upper limb function in some spinal muscular atrophy patients. Plus, there are differing opinions on how to refer to a person with a disability. Halsey Blocher's recent column discusses this topic and talks about how there's not one right a...
14m Nov 18, 2021
14m
#94: Interview With Pamela K. Muhammad, Author and Entrepreneur With SMA
In episode 94, host Kevin Schaefer talks with Pamela K. Muhammad from Monroe, Louisiana. Pamela is the author of two books, and she is currently in the process of launching her own fashion accessory business. She talks about living independently with SMA, combatting disability stereotypes, and shares advice for others in the community. ================================ Pamela’s poetry book: ht...
33m Nov 16, 2021
33m
Anxiety and Depression Common Among School-Age SMA Patients in China & Facing SMA Challenges
SMA News Today’s multimedia associate, Price Wooldridge, discusses how a study in China suggests a high prevalence of anxiety and depression among school-age children and adolescents with spinal muscular atrophy. Also, DeAnn Runge shares the topic of her recent vlog. She talks about the feelings associated with losing abilities and describes how she overcame the obstacles that threatened her h...
11m Nov 15, 2021
11m
Belgian Newborn Screening Pilot for SMA Becomes Official & Getting Through Physical Therapy with SMA
SMA News Today’s multimedia associate, Price Wooldridge discusses how a pilot of newborn screening for spinal muscular atrophy in Liege province became in 3 years a government-run program for Southern Belgium. Also, Katie Napiwocki's columns always have DeAnn reflecting on her own SMA journey. Today she reads the article, "The Asymmetries of a Physical Therapy Routine and a Koala’s Conquest," ...
13m Nov 11, 2021
13m
SMA Doesn't Stop Teen From Pursuing Academic Dreams & How To Make A More Accessible World
SMA News Today’s multimedia associate, Price Wooldridge, shares the story of Ben Lou, an 18-year-old with SMA type 2, mentally as strong as they come: accepted to three top US universities, and that is now attending MIT. Plus, DeAnn talks about making her world more accessible even if that means inconveniencing others. Giving some examples she demonstrates the conflicting feelings she faces. ...
11m Nov 08, 2021
11m
Cure SMA Advocates for Better Wheelchair Storage for Air Travel & SMA Issues Can Be Overwhelming
SMA News Today’s multimedia associate, Price Wooldridge, discusses how in an open letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair storage for air travel. Plus, Alyssa Silva's recent column hits close to home for DeAnn. She shares her article that talks about how overwhelming SMA medical issues can be and encourages listeners to continue t...
12m Nov 04, 2021
12m
#93: Interview With Garrett Lerner, Co-creator and Executive Producer of NBC Series “Ordinary Joe”
In episode 93, host Kevin Schaefer talks with Garrett Lerner from Los Angeles, California. Garrett is the co-creator and co-showrunner of the NBC drama series “Ordinary Joe,” and he is a father to a son with SMA type II. He talks with Kevin about the origins of the show and its disability representation, his family life, and the importance of seeing disabled characters on screen. =============...
45m Nov 02, 2021
45m
Canadian Agency Favors Zolgensma Only for Babies Up to 6 Months Old & Sometimes SMA Is Just Too Much
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article about how a Canadian agency found evidence lacking to support gene therapy reimbursement in older babies and toddlers with spinal muscular atrophy. Plus, DeAnn Runge talks about how sometimes being inundated with all things SMA gets to be too much for her. Today she's talking about a topic totally unrelated to SMA to...
10m Nov 01, 2021
10m
Phase 3 Apitegromab Trial Planned for Non-ambulatory Types 2 And 3 & Latest Topics on Our Forums
SMA News Today’s multimedia associate, Price Wooldridge, discusses an article on how Scholar Rock plans to initiate a Phase 3 trial of apitegromab in spinal muscular atrophy types 2 and 3 patients unable to walk by year's end. Also DeAnn Runge gives an update on the latest happenings over on the forums. Relevant topics like the vaccines, the latest cell phones and accessibility apps are being ...
8m Oct 28, 2021
8m
Neurofilament Blood Levels Likely to Predict Treatment Response in SMA
SMA News Today’s multimedia associate, Price Wooldridge, discusses a news article on how blood levels of phosphorylated neurofilament heavy chain, nerve cell damage marker, are related to greater motor gains in SMA infants, children. Also, as treatments emerge, the SMA type system is evolving. DeAnn Runge talks about what she feels are the faults with the system. She also discusses how she'd l...
9m Oct 25, 2021
9m