#121: Pidgie, Singer and Songwriter With SMA

#121: Pidgie, Singer and Songwriter With SMA

In episode 121, host Kevin Schaefer talks with Patricia Panzarino, who goes by her musician name, Pidgie. Pidgie is a singer and songwriter from Cape Cod, Massachusetts, and she has SMA Type 2. She discusses growing up in a pre-ADA era, building her music career, and starting Evrysdi. ================================ 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

Jaksot(440)

#86: Price Wooldridge, The Voice Behind the SMA Flash Briefings

#86: Price Wooldridge, The Voice Behind the SMA Flash Briefings

In episode 86, host Kevin Schaefer talks with Price Wooldridge from Fort Worth, Texas. Price is a voiceover contributor for the SMA News Today flash briefings, and he lives with a rare autoimmune disease called Lambert-Eaton Myasthenic Syndrome. Price discusses his background and diagnosis story, the commonalities and differences between SMA and LEMS, and his advice for others living with rare diseases. ================================ To learn more about Evrysdi, please visit www.ApprovedForSMA.com ================================ To take part in our ongoing discussions regarding SMA, please visit www.smanewstoday.com/forums ================================ For the most up-to-date information regarding SMA, please visit www.smanewstoday.com

20 Heinä 202139min

Sma Treatment May Be More Effective by Altering an Underlying Molecule & Having a Service Dog

Sma Treatment May Be More Effective by Altering an Underlying Molecule & Having a Service Dog

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinal Muscular Atrophy (SMA) treatment may be more effective by altering an underlying molecule. DeAnn Runge shares what having a service dog entails. She just completed her Public Access Recertification and details how it was different from years past. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

19 Heinä 20216min

Spinraza Improves Motor Function in Children And Adults With SMA Type 3 Children

Spinraza Improves Motor Function in Children And Adults With SMA Type 3 Children

SMA News Today’s multimedia associate, Price Wooldridge, discusses how Spinraza improves motor function in Spinal Muscular Atrophy (SMA) Type 3 children. In recognition of Disability Pride Month, DeAnn Runge reads the column ‘All of Us Will Become Disabled and Sick’ by Brianna Albers. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

16 Heinä 202114min

Stem Cell Therapy May Benefit Some Type 1 Infants & Disability Pride Month

Stem Cell Therapy May Benefit Some Type 1 Infants & Disability Pride Month

SMA News Today’s multimedia associate, Price Wooldridge, discusses a stem cell therapy which may benefit some Spinal Muscular Atrophy (SMA) Type 1 infants. Also, Kevin Schaefer shares his thoughts on Disability Pride Month. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

14 Heinä 20217min

People in UK Urged to Sign Petition Adding SMA to Newborn Screening

People in UK Urged to Sign Petition Adding SMA to Newborn Screening

SMA News Today’s multimedia associate, Price Wooldridge, discusses the UK SMA Newborn Screening Alliance calling on people to take action and sign a petition requesting Spinal Muscular Atrophy (SMA) be added to newborn screening. Also, DeAnn Runge talks about their recent van troubles and the extra complexity disability adds to the situation. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

12 Heinä 20218min

US Pediatricians Often Overlook Steps in Diagnosing SMA, Surveys Show

US Pediatricians Often Overlook Steps in Diagnosing SMA, Surveys Show

SMA News Today’s multimedia associate, Price Wooldridge, discusses how many U.S. pediatricians fail to use developmental screening tools in diagnosing Spinal Muscular Atrophy (SMA). Plus, DeAnn Runge shares a recent article by Halsey Blocher, “The Evolution of Adult Programs at the Cure SMA Conference.” Halsey reminisces on past conferences and talks about how and why the programs have evolved over the years. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

9 Heinä 202114min

Texas Adds SMA to Its Newborn Screening Program

Texas Adds SMA to Its Newborn Screening Program

SMA News Today’s multimedia associate, Price Wooldridge, discusses Texas adding Spinal Muscular Atrophy (SMA) to its newborn screening program. Also, Forums Director Kevin Schaefer reads a column about making churches more accessible. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

7 Heinä 20217min

#85: Interview With Mikey and Noelle Hazel, Siblings with SMA

#85: Interview With Mikey and Noelle Hazel, Siblings with SMA

In episode 85, host Kevin Schaefer talks with Mikey and Noelle Hazel from Union, New Jersey. Mikey and Noelle are siblings who both have SMA Type II. They talk about growing up with SMA together, combating ableism, and entering a new chapter in their lives. ================================ Link to Mikey’s YouTube Channel: https://www.youtube.com/channel/UCNx-ePIR4bO2tPKCSfPb9fQ ================================ 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

6 Heinä 202156min

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