Rare Disease Groups, Pharmas Join SMA Europe Push for Newborn Screening

Rare Disease Groups, Pharmas Join SMA Europe Push for Newborn Screening

SMA News Today’s multimedia associate, Price Wooldridge, discusses rare disease groups and pharmaceutical companies, joining SMA Europe in a push for newborn screening for Spinal Muscular Atrophy (SMA). Forums Director Kevin Schaefer shares his thoughts on “Disability Visibility,” a collection of first-person essays from a wide range of disabled authors. Are you interested in learning more about spinal muscular atrophy? If so, please visit https://smanewstoday.com/

Jaksot(444)

#125: Brooklyn Nichols, child author with SMA, and her mother, Keanna

#125: Brooklyn Nichols, child author with SMA, and her mother, Keanna

In episode 125, host Kevin Schaefer talks with Brooklyn and Keanna Nichols from Athens, Alabama. Brooklyn is a middle schooler with SMA who co-authored a children’s book called “A Do Nothing Day” with...

7 Maalis 202353min

#124: A conversation with an interabled couple, Steve and Brittany Bingman

#124: A conversation with an interabled couple, Steve and Brittany Bingman

In episode 124, host Kevin Schaefer talks with Steve and Brittany Bingman from Mount Juliet, Tennessee. Steve is an administrative officer at the U.S. department of veteran affairs, and he lives with ...

21 Helmi 202346min

#123: A Conversation With LaMondre Pough and Gabrielle Runyon, Two Black Disability Advocates

#123: A Conversation With LaMondre Pough and Gabrielle Runyon, Two Black Disability Advocates

In episode 123, host Kevin Schaefer talks with returning guests LaMondre Pough and Gabrielle Runyon, two Black Disabled advocates. In recognition of Black History Month, LaMondre and Gabrielle share t...

7 Helmi 202352min

#122: A Conversation With Rare Disease Advocates

#122: A Conversation With Rare Disease Advocates

In episode 122, host Kevin Schaefer talks with three of his coworkers from BioNews Inc., the parent company of SMA News Today. Brittany Foster is BioNews’ HR Coordinator, and she lives with pulmonary ...

17 Tammi 202358min

#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 di...

4 Tammi 202338min

#120: Dom Evans, Activist and Filmmaker

#120: Dom Evans, Activist and Filmmaker

In episode 120, host Kevin Schaefer talks with Dom Evans (he/they), LGBTQ and disability activist and filmmaker. Dom discusses his background, growing up with SMA, and how he became an activist. He al...

20 Joulu 202250min

#119: Chaz Hayden Discusses His Debut Novel

#119: Chaz Hayden Discusses His Debut Novel

In episode 119, host Kevin Schaefer talks with Chaz Hayden, a young adult author with SMA. Chaz’s debut novel, The First Thing About You, tells the story of a 15-year-old boy with SMA named Harris who...

6 Joulu 202241min

#117: Delphine Andrews and Kevin Davis, Interabled Couple

#117: Delphine Andrews and Kevin Davis, Interabled Couple

In episode 117, host Kevin Schaefer talks with Delphine Andrews and Kevin Davis from North Carolina. Delphine has SMA and she began dating Kevin in early 2020. They discuss their careers, daily lives,...

1 Joulu 202253min

Suosittua kategoriassa Terveys ja hyvinvointi

unicast
voi-hyvin-meditaatiot-2
vakeva-elama-viisaampi-mieli-vahvempi-keho
tiedenaiset-podcast
psykopodiaa-podcast
rss-pitaisko-erota
puhu-muru
katilon-kahvitunti
terapiassa
rss-uplevel-by-sonja-hannus
rss-rakas-mielenterveyteni
rss-narsisti
selviytyjat-tarinoita-elamasta
junnut-pelissa
rss-duodecim-lehti
meditaatiot-suomeksi
audio-sport-juoksu
rss-pt-paahtio
rss-addiktit
rss-vapaudu-voimaasi