Sma News & Perspectives

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 thoughts on becoming a mother and the nuances of parenting with a disability. ================================ Learn more about newborn screenings here: https://smanewstoday.com/news-posts/2021/12/03/muscular-dystrophy-canada-novartis-maritime-newborn-sma-screening-program/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://w

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 a New Mantra,” he chronicles why he needs surgery and how having a phrase to help boost his morale is helpful to maintain that fighting spirit. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.

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. Also, when you rely on others for personal care, maintaining privacy can be difficult. DeAnn Runge talks about a situation that arose that has her questioning the level of privacy in her life. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/.

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 organized so when life becomes overwhelming, she doesn’t have to worry about small things like where her cell phone charger is. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 caregivers here: https://smanewstoday.com/forums/forums/topic/starting-the-search-for-new-caregivers/ ================================ Columns: - ‘Don’t Quit Before the Miracle Happens’ by Sherry Toh - https://smanewstoday.com/columns/2022/01/05/instead-new-years-resolutions-im-making-playlist/ - Sharing Our Stories With the SMA Community’s Next Generation by Halsey Blocher - https://smanewstoday.com/columns/2022/01/07/sharing-our-stories-with-next-generation-sma-community/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To

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 the nature of the job itself already make finding reliable staff difficult. Adding a vaccine mandate on top of that makes it virtually impossible. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 relate to losing friends all too soon, but he’s also struggled with balancing ambition and contentment. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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. Even after replacing them, they’re not what she hoped for. She’s now contemplating what her next action should be. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 opportunity that fell into place and how he’s using that to propel future achievements. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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://www.facebook.com/aliramostherapy/ ================================ To learn more about Evrysdi, please visit www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

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. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 Thanks for Our New Home.” She talks about how they’ve made the transition easier and steps she’s taken to make her new space feel like home. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 muscular atrophy? If so, please visit https://smanewstoday.com/

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 their family holiday traditions as well as points out why she cherishes them. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 do to make it work. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 reminds her of when she was trying to access Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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’s column: https://smanewstoday.com/from-where-i-sit-halsey-blocher/ Heather’s 31 Days of SMA story: https://smanewstoday.com/31-days-of-sma/2020/08/14/31-days-of-sma-heather-halsey-dye/ ================================ To learn more about Evrysdi, please visit http://www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit http://www.smanewstoday.com

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 interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 how he prioritizes his precious time. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

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 treatment journey and talks about her plan going forward. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/