#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 her mom’s cousin. She and her mom talk about inclusivity, living with SMA, and the origins of the book. ================================ To order a copy of the book, email Keanna at robertnkeanna@icloud.com. ================================ To take part in our ongoing discussions regarding SMA, please visit http://www.smanewstoday.com/forums

Jaksot(440)

The "Rare Barometer” Is Helping Eurordis Shape EU Rare Disease Policies & SMA Community Diversity

The "Rare Barometer” Is Helping Eurordis Shape EU Rare Disease Policies & SMA Community Diversity

We discuss “Rare Barometer”, which is a program that is helping Eurordis shape EU rare disease policies. Also, Community Development Manager Kevin Schaefer reads from his latest column about diversity within the SMA community. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

16 Elo 20199min

Zolgensma For SMA Types 1, 2 And 3, More Options On The Way & Angela Titcombe

Zolgensma For SMA Types 1, 2 And 3, More Options On The Way & Angela Titcombe

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how patients with SMA Types 1, 2, & 3, options for Zolgensma exist, and more may be on the way. Also, Community Development Manager Kevin Schaefer reads from Angela Titcombe’s 31 Days of SMA story. Angela talks about being a teacher with SMA. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

14 Elo 201911min

Ontario Patients Are Granted With Wider Access To Spinraza & Current Treatments, Brighter Futures

Ontario Patients Are Granted With Wider Access To Spinraza & Current Treatments, Brighter Futures

We discuss how SMA patients in Ontario are granted wider access to Spinraza. Also, SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how current treatments for SMA are giving those of us with the disease, a brighter and stronger future. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

12 Elo 20198min

Family Says Zolgensma Saved All of Their Lives; Their Gene Therapy & Tyler Dukes

Family Says Zolgensma Saved All of Their Lives; Their Gene Therapy & Tyler Dukes

We discuss a family that states Zolgensma saved all of their lives, and they share their families journey through gene therapy, Also, Community Development Manager Kevin Schaefer reads from Tyler Dukes' 31 Days of SMA story. Tyler shares his experiences with living independently. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

9 Elo 20198min

Zolgensma's Potential To Change The Whole Landscape of SMA & Melissa Milinovich's Story

Zolgensma's Potential To Change The Whole Landscape of SMA & Melissa Milinovich's Story

SMA News Today’s Director of Multichannel Content, Michael Morale, discusses how Zolgensma has the potential to change the whole landscape of SMA. Also, Community Development Manager Kevin Schaefer reads from Melissa Milinovich's 31 Days of SMA story. Melissa shares her experiences as a parent who has SMA. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

7 Elo 20199min

#39 - Interview With Jason Bertsch

#39 - Interview With Jason Bertsch

In episode 39 of the SMA News Today Podcast, host Kevin Schaefer interviews Jason Bertsch from Greenfield, Indiana. Jason and his wife Kelly have two sons, and their youngest, Luke, has SMA Type 2. Jason talks about his family, Spinraza, and a Star Wars Celebration story that makes Kevin insanely jealous. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

6 Elo 201933min

European SMA Advocates Question The EU’s Willingness to Reimburse Zolgensma & Independence

European SMA Advocates Question The EU’s Willingness to Reimburse Zolgensma & Independence

We discuss how European SMA advocates question the EU’s willingness to reimburse for Zolgensma. Also, SMA News Today forums moderator DeAnn Runge shares her perspective about claiming your independence while living with SMA. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

5 Elo 20198min

#38 - Roundtable Discussion - Discussion for July 2019

#38 - Roundtable Discussion - Discussion for July 2019

In the latest episode of the SMA News Today Podcast, hosts Kevin Schaefer and Michael Morale discuss updates regarding SMA therapies Spinraza and Reldesemtiv. Also, Kevin and columnist Brianna Albers share their experiences at the 2019 Cure SMA conference. Are you interested in understanding gene therapy? ExploreGeneTherapy.com has helpful information about gene therapy, including its history and how it is being investigated for the treatment of genetic diseases. Visit www.exploregenetherapy.com

16 Heinä 201940min

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