Zolgenzma Found To Be Safe And Effective in SMA Toddlers & The Importance of Schedules And Routines
SMA News Today’s multimedia associate, Price Wooldridge, discusses Zolgenzma being found safe and effective in Spinal Muscular Atrophy (SMA) toddlers. Also, DeAnn Runge welcomes new listeners and forum members as she points out the forums are a supportive and informative community. Vaccine discussions continue as vaccination site crowd size becomes concerning. The importance of schedules and routines are a topic of conversation as well as a wheelchair feature wish list. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
29 Mars 202110min
Evrysdi Safe in SMA Patients Previously Given Other Therapies & The Evolution of Technology
SMA News Today’s multimedia associate, Price Wooldridge, discusses how treatment with Evrysdi is safe in Spinal Muscular Atrophy (SMA) patients previously given other therapies. DeAnn Runge talks about how much technology has evolved in her lifetime. From cassette tapes to digital music she discusses how the advancements have enhanced her life. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
26 Mars 20219min
SMA Foundation and PTC Joint Efforts to Fund Regenerative Medicine Research
SMA News Today’s multimedia associate, Price Wooldridge, discusses the SMA Foundation and PTC Therapeutics joint efforts to fund regenerative medicine research. Also, Forums Director Kevin Schaefer shares his perspective on getting the COVID-19 vaccine. Also, he discusses an Instagram live series he’s hosting on the topic of relationships and SMA. To learn more about spinal muscular atrophy, visit our website at www.smanewstoday.com.
24 Mars 20216min
Reldesemtiv Aids Motor and Respiratory Strength in Types 2 and 3, Early Trial Finds
SMA News Today’s multimedia associate, Price Wooldridge, discusses how the therapy, Reldesemtiv, aids motor and respiratory strength in Spinal Muscular Atrophy (SMA) Types 2 and 3. Also, with vaccinations ramping up across the country daydreaming is a popular trend on the forums. Post vaccination activities top the list. Recent articles by SMA News Today columnists are always of interest as well. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
22 Mars 20219min
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 rear-wheel drive to front wheel drive. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
19 Mars 20219min
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 interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
17 Mars 20218min
#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 https://smanewstoday.com/news-posts/2021/02/24/cure-sma-free-virtual-therapy-sessions/ -Zolgensma Available Soon to Eligible SMA Type 1 Patients in England, Scotland https://smanewstoday.com/news-posts/2021/03/10/zolgensma-available-certain-sma-type-1-patients-england-scotland/ -New SMN-boosting Molecule Shows Promise as Add-on Therapy https://smanewstoday.com/news-posts/2021/02/17/new-smn-protein-boosting-molecule-shows-promise-add-on-sma-therapy-study-patient-derived-cells/ -Rare Disease “Patient Hero” Raises Awareness Through Fashion https://smanewstoday.com/news-posts/2021/02/25/tristan-lee-rare-disease-day-patient-hero-raises-awareness-fashion-modeling/ ================================ Links to columns: -”Mama, It’s Amazing What SMA Patients Can Do: A Reminder of Our Adaptability” by Sherry Toh - https://smanewstoday.com/columns/2021/03/03/sma-patients-adaptability-amazing/ -”Hot Air Balloons Adrift: Appreciating My Pulmonary Function With SMA” by Katie Napiwocki - https://smanewstoday.com/columns/2021/03/04/appreciating-pulmonary-function-hot-air-balloons-adrift/ -”Amid the Busyness of Life With SMA, I’m Learning to Embrace Stillness” by Kevin Schaefer - https://smanewstoday.com/columns/2021/03/09/embracing-stillness-amid-busy-life-sma/ ================================ 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 www.smanewstoday.com
16 Mars 202140min
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 muscular atrophy? If so, please visit https://smanewstoday.com/
15 Mars 202113min
