#99: SMA and Motherhood

#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 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://www.smanewstoday.com

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How Growth-Friendly Spinal Implants May Help SMA Children Before Fusion Surgery

How Growth-Friendly Spinal Implants May Help SMA Children Before Fusion Surgery

Forums Director Kevin Schaefer talks about an anthology of essays from the New York Times series on disability. SMA News Today’s multimedia associate, Price Wooldridge, discusses how growth-friendly spinal implants may help SMA children before fusion surgery. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

8 Touko 20206min

How SMA-Related Humor Presents Itself in Unexpected Moments, Fundraising Options & Online Therapy

How SMA-Related Humor Presents Itself in Unexpected Moments, Fundraising Options & Online Therapy

Forums Director Kevin Schaefer talks about how SMA-related humor presents itself in unexpected moments. And also, this week the topics included on the forums range from discussing fundraising options in the current environment, using online therapy platforms such as Talkspace and even a book discussion. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

6 Touko 20205min

#57 - Interview with Heather Kerstetter

#57 - Interview with Heather Kerstetter

In episode 57, host Kevin Schaefer interviews Heather Kerstetter from Philadelphia, Pennsylvania. Heather is a social worker who has SMA Type 3. She talks about growing up with SMA, relationships, and her advocacy work for people with disabilities. To learn more about spinal muscular atrophy, visit www.smanewstoday.com.

5 Touko 202026min

How Taking Part in Adapted Sports Improves Mental Health in Patients With SMA

How Taking Part in Adapted Sports Improves Mental Health in Patients With SMA

Forums moderator DeAnn Runge discusses how looking at what makes her life easier now determines what would make her life easier moving forward. SMA News Today’s multimedia associate, Price Wooldridge, discusses how taking part in adapted sports improves mental health in patients with Spinal Muscular Atrophy and other neuromuscular disorders. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

4 Touko 20208min

Discussing The Lack of Muscle Cell Signaling Which is Seen to Kill Motor Neurons in SMA-LED2

Discussing The Lack of Muscle Cell Signaling Which is Seen to Kill Motor Neurons in SMA-LED2

SMA News Today’s multimedia associate, Price Wooldridge, discusses the lack of muscle cell signaling which is seen to kill motor neurons in SMA-LED2. SMA News Today’s Senior Director of Multichannel Content, Michael Morale, talks about how he’s had to trust others to help him during the COVID-19 pandemic. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

1 Touko 20206min

Telemedicine, Therapy Platforms, Alternative Exercise Routines & Hospital Preparedness Folders

Telemedicine, Therapy Platforms, Alternative Exercise Routines & Hospital Preparedness Folders

Forums Director Kevin Schaefer reads from his latest column about a new at-home exercise routine he’s developed, using his electric ceiling lift. Also, on our forums over the last week we’ve covered many topics including telemedicine, therapy platforms, alternative exercise routines along with advance directives and hospital preparedness folders. Are you interested in learning more about spinal muscular atrophy? If so, please visit smanewstoday.com/

29 Huhti 20205min

Discussing Motor Gains and Safety with Zolgensma’s IT Use in a STRONG Trial

Discussing Motor Gains and Safety with Zolgensma’s IT Use in a STRONG Trial

While thinking about how to navigate the Coronavirus situation, forums moderator DeAnn Runge draws parallels to a family game they played. SMA News Today’s multimedia associate, Price Wooldridge, discusses motor gains and safety with Zolgensma’s IT use in a STRONG trial. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

27 Huhti 20209min

First Patient Treated in The Phase 2/3 Trial, Assessing Higher Doses of Spinraza

First Patient Treated in The Phase 2/3 Trial, Assessing Higher Doses of Spinraza

Forums Director Kevin Schaefer writes about a new at-home exercise routine he’s developed, using his electric ceiling lift. SMA News Today’s multimedia associate, Price Wooldridge, discusses the first patient treated in the Phase 2/3 trial, assessing higher doses of Spinraza. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

24 Huhti 20206min

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