Over the past few months, we are proud to have shared photos, updates and stories from our ‘Yes I can’ project. You’ll have seen the looks of concentration on the faces of the 16-25 year olds abseiling at the Calvert Trust residential weekends, or the numerous guest speakers at our fortnightly online meet ups.
The project aims to help 14-25 year olds living with Duchenne muscular dystrophy seize control by transforming transition to adulthood, has gained momentum since its inception made possible through support from The National Lottery and a funding consortium.
We asked the Duchenne community; ‘We’re transforming transition, are you with us?’ and they have answered a resounding; ‘Yes!’.
Transition to adulthood is a challenging time for young people living with Duchenne, coupled with the move from paediatric to adult clinical care. Individuals often feel isolated, and find it difficult to gain independence. Through our partnership with Demelza Hospice, we heard what it is that young people and adults living with Duchenne want and need to help them through transition and beyond, and we are proud to have channelled these findings in the ‘Yes I can’ project.
Combining residential and online professional-led training, the ‘Yes I can’ project provides social interaction, skills training and peer-to-peer support. In the process, we are helping to create role models in young people living with Duchenne and we are facilitating groups who are sharing experiences and learning from each other.
We have seen first hand the power of peer-to-peer networking for the young people and adults living with Duchenne who attended the residential weekends; making new friends, chatting to another young person who gets it, and sharing a joke together. Three very simple experiences you cannot put a price on.
PTC Therapeutics, a US-based global pharmaceutical company has been a firm part of the Duchenne community for many years, investigating gene therapy and small molecule potential treatments of rare diseases since 1998. As long-term supporters of our Action Duchenne Conference, we were delighted to submit our project proposal for their coveted 2022 PTC STRIVE Awards Programme. We are proud to announce that;
The external panel of judges reviewed submissions from forty (40) international Duchenne muscular dystrophy (DMD) patient advocacy organizations. Four (4) proposals were chosen to each receive a STRIVE award across the various categories. All of the submissions reflected unique and thoughtful solutions to the diverse, unmet needs in the global DMD community.
Lucy Oliveira, Corporate Relations Coordinator, PTC Therapeutics
We are delighted that PTC Therapeutics are supporting this much-needed project for young people and adults living with Duchenne, in the often challenging transition into adulthood. With this additional grant, we will be able to offer more young people and adults skills-based training, social interaction and peer-to-peer support through our residential and online professional- and peer- led workshops. We will help to create role models living with Duchenne and help others to learn from them and each other.
Ravi Mehta – Project Engagement & Support Officer
Thanks to PTC Therapeutics for making this possible.
Sarepta updates on MOMENTUM clinical trial
