Hosted by Pathfinders Neuromuscular Alliance, a user led organisation, you will hear real life experiences from adults with DMD who are living independently.
We’ll also be joined by parents who have supported or are currently supporting their young adult to transition into an independent life.
The event will kick off with an introduction from Dr Jon Rey-Hastie, who himself has DMD. Next we will hear from Dr Janet Hoskin about what was learned in Action Duchenne’s Takin’ Charge project.
We’ll have a selection of live and pre recorded interviews from both adults with DMD and parents:
- Sam Cornelius-Light & Benjamin James talk Uni life
- Stevie and Faye Pearson share their experiences of parenthood
- Mark Chapman (honorary president of Pathfinders) shares 50 years of doing it his way!
- Ryan & Karen (Ryan’s mum) O’Leary share their experiences of how a residential college gave them the skills needed to live independently.
- Lee & Kathryn (Lee’s mam) Armstrong discuss encouraging independence, driving, employment and moving out.
- Alan Pockley tells us how another hospice user’s independent living encouraged him to move into his own bungalow.
- Matt O’Sullivan touches on married life
The event will finish with a panel of guests taking questions.
- Vici and Zak Richardson
- Celine Barry
- Jonny Howsley
- Penny Southall