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. 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/
10 Jan 202210min
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 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/
6 Jan 202210min
#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://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
4 Jan 202235min
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. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
3 Jan 202211min
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 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/
30 Dec 202111min
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 muscular atrophy? If so, please visit https://smanewstoday.com/
27 Dec 202111min
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 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/
23 Dec 20218min
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 do to make it work. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
20 Dec 20216min
