Fatigue and Quality of Life in SMA Patients Not Related? & Not Letting SMA Define You as a Person
We discuss a study where perceived fatigue was not linked to physical factors regarding the quality of life in SMA patients. Also, SMA News Today’s Director of Multimedia, Michael Morale, talks about how living with SMA, has never defined him as a person. Hard work and the pursuit of success was what guided him in his life. SMA is just a byproduct of something that he has to live with. 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
11 Helmi 20199min
#27 Interview With Michele Erwin
In episode 27 of the SMA News Today Podcast, Community Editor Kevin Schaefer interviews Michele Erwin, whose son Greyson has SMA. Michele is the founder of All Wheels Up, an organization dedicated to improving flight accommodations for wheelchair-users. In this interview, Michele talks about being a disability advocate, and how it coincides with parenting a child with SMA.
11 Helmi 201919min
#25 - Interview With Tyler Dukes
SMA News Today Community Editor Kevin Schaefer interviews Tyler Dukes. Tyler has SMA Type 2, and he shares his perspectives about growing up with SMA, and the hurdles he's faced throughout his life.
7 Tammi 201953min
#24 - Abby Quinn & Kristen
SMA News Today Community Editor Kevin Schaefer interviews Abby Quinn and Kristen Bathe -- childhood friends who run an inclusive fashion line for people with disabilities. Read all about them here: https://smanewstoday.com/forums/forums/topic/11323/
16 Joulu 201830min
#23 Roundtable Discussion - Importance Of Physical Therapy
SMA News Today Community Editor Kevin Schaefer and Forums and Multimedia Director Michael Morale discuss the advantages of taking physical therapy while on active treatment with Spinraza. Kevin discusses his aquatic therapy and Michael discusses his traditional therapy using resistance bands and range of motion and isometric exercises.
7 Joulu 201854min
#22 SPECIAL EDITION - Zolgensma (AVXS - 101) Under Priority FDA Review
SMA News Today Forums & Multimedia Director Michael Morale discusses the breaking news Zolgensma (AVXS-101) Under Priority FDA Review as Possible Gene Therapy for SMA Type 1. Read the full report here: https://smanewstoday.com/2018/12/04/zolgensma-avxs-101-under-priority-fda-review-as-possible-gene-therapy-for-sma-type-1/
4 Joulu 20186min
#21 - Roundtable Discussion Of AVXS - 101
SMA News Today Community Editor Kevin Schaefer and Forums Director Michael Morale discuss AveXis' filing for FDA approval of experimental small therapy AVXS-101.
26 Marras 201827min
#20 Interview With Randy Clark
In SMA News Today's 20th podcast episode, Community Editor Kevin Schaefer interviews veteran caregiver Randy Clark, who has worked with Kevin for four years.
16 Marras 201828min
