Episode #19 Vincent Johnsson

18/06/2021

This week’s podcast guest is Vincent Johnsson, Dad of Hannah and three boys, he’s also on about day 470 something of a 500 day (yes, 500 days…) 5K a day challenge which started even before the pandemic (can anyone even remember those days?) and has gone on all throughout! 

At first glance, Vincent is not at all the usual pain-hungry, self-punishing type male we typically witness undergoing these trials of physical and spiritual endurance under the guise of fundraising at Reverse Rett, but he is no less passionate, determined, angry, committed, hopeful and stoical about this never-ending daily get up and do it all again grind which is living with Rett Syndrome, oh and the 500 day running thing as well. 

Throughout this episode, I laughed and cried and walked away, more determined than ever, to keep on going until the next lamppost. Have a listen and let us know what you think [email protected] or @reverserett on any of the socials.

Links

National Sleep Foundation

SMA Gene Therapy news

Rett Syndrome may predispose patients to high-fat diets and obesity