#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://Rainbowgal.com ================================ 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
7 Syys 202145min
$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 spinal muscular atrophy? If so, please visit https://smanewstoday.com/
6 Syys 20216min
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 stories and advocating to make the world a better place. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
2 Syys 20218min
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 social media: Facebook - https://www.facebook.com/smanewstoday Twitter - https://twitter.com/smanewstoday Instagram - https://www.instagram.com/smanewstoday
31 Elo 202150min
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. She explains how she applies this motto in her life. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
30 Elo 20218min
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 the stories. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
27 Elo 202111min
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, visit our website at http://www.smanewstoday.com
25 Elo 202110min
‘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 that she says it’s worth the effort. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/
23 Elo 20219min
