A ‘Miracle’: Spinraza Gives Boy a Chance to Grow Up & Life Is an Adventure, So Let’s Be Pioneers

A ‘Miracle’: Spinraza Gives Boy a Chance to Grow Up & Life Is an Adventure, So Let’s Be Pioneers

SMA News Today’s multimedia associate, Price Wooldridge, discusses a “miracle” when Spinraza gives a boy, now 5 years old, a chance to grow up fast and show good progress. Also, forums Director Kevin Schaefer reads a column by Ari Anderson about being a pioneer with SMA. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Episoder(443)

#108: A Mother Discusses the Approval of Evrysdi for Infants With SMA

#108: A Mother Discusses the Approval of Evrysdi for Infants With SMA

In episode 108, host Kevin Schaefer talks with Logan Nantz from southern Indiana. Logan’s daughter Hayden is two years old and has SMA. They discuss Logan family’s story, as well as the news that Gene...

21 Jun 202224min

#107: A Conversation About Mental Health With LGBTQ+ and Disability Advocates

#107: A Conversation About Mental Health With LGBTQ+ and Disability Advocates

In episode 107, host Kevin Schaefer talks about mental health with LGBTQ+ and disability advocates. Panelists include Ali Ramos (she/her), licensed social worker; Sherry Toh (she/they), columnist for ...

7 Jun 202247min

#106: A Conversation About Women’s Mental Health With Rare Disease and Disability Advocates

#106: A Conversation About Women’s Mental Health With Rare Disease and Disability Advocates

In episode 106, host Kevin Schaefer talks with a group of rare disease and disability advocates about women’s mental health. Panelists include Charlene Marshall, licensed mental health professional, a...

17 Mai 202233min

#105: A Conversation About Men’s Mental Health With Rare Disease and Disability Advocates

#105: A Conversation About Men’s Mental Health With Rare Disease and Disability Advocates

In episode 105, host Kevin Schaefer talks with rare disease and disability advocates about men’s mental health. Panelists include Paris Dancy, licensed mental health professional, and columnist for Cu...

3 Mai 202255min

#104: Interview With Ben Lou, Mathematics Student With SMA

#104: Interview With Ben Lou, Mathematics Student With SMA

In episode 104, host Kevin Schaefer talks with Ben Lou from San Diego, California. Ben is a student at MIT, planning to double major in math and physics. He discusses his lifelong love for learning, g...

19 Apr 202233min

#103: Clinical Trials and Advocacy with Stephen Mikita and Arya Singh

#103: Clinical Trials and Advocacy with Stephen Mikita and Arya Singh

In episode 103, host Kevin Schaefer talks with Stephen Mikita and Arya Singh, two individuals with SMA who have years of experience with clinical trials. Stephen, 66, was an Assistant Attorney General...

5 Apr 202242min

#102: Interview with Amber-Joi Watkins, SMA Mom and Advocate

#102: Interview with Amber-Joi Watkins, SMA Mom and Advocate

In this episode, host Kevin Schaefer talks to Amber-Joi Watkins, an SMA mom and advocate. Amber-Joi talks about raising her daughter, Celine, and becoming part of the SMA community. She also discusses...

15 Mar 202231min

Using Ultrasound May Help in SBMA Diagnosis & Dealing With Hospital Stays

Using Ultrasound May Help in SBMA Diagnosis & Dealing With Hospital Stays

SMA News Today’s multimedia associate, Price Wooldridge, discusses how men with spinal and bulbar muscular atrophy (SBMA) had abnormally small nerves in the limbs, especially the arms, as measured by ...

2 Mar 20228min

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