Emma-Jayne Ashley – Founding Trustee
Contact: Emma@CureDM.co.uk
My eldest son was born in 1999 with paternally inherited Congenital Myotonic Dystrophy. The complexity of his needs and day-to-day care has led me to where I am now, working within the rare disease community, with a special interest in research and clinical trials. I have a strong presence with patients living with DM, and a focus on improving day to day living and QOL, including improved access to palliative and end of life care, for families now while we work towards bringing treatments to market.I
Co-founder of the Congenital Myotonic Dystrophy Fight fund (an MDUK family fund 2015-2020. Founding Director of Cure DM Ventures CIC (2017 to present day). Founding Trustee of Cure Myotonic Dystrophy UK Charity in 2020. Independent Rare Disease Patient represenative for EPIC (2022 ongoing)
Dregan was diagnosed with CDM in 2014, the day before his 15th birthday after a lifetime of struggles! Unusually, he has inherited the gene from his biological father.
“Science is moving on every day, and now is an exciting time to be involved. I am keen to raise awareness of Myotonic Dystrophy, and improve knowledge amongst professionals. Especially the prevalence of CDM inherited paternally. Until not so long ago it was thought impossible, but there are more and more cases being reported, and it is important that people don’t assume the child doesn’t have the disorder solely based on the appearance of the mother”
Peter Ashley – Founding Tustee and Chair
Contact: Pete@CureDM.co.uk
“I wanted to do something to help the DM community from our personal experience of having a son with Congenital Myotonic Dystrophy and our fight over many years for medical knowledge, therapies, treatments, education and quality of life.
DM is complex and we all have experience of many services in the NHS. With a background in organisation change and regulatory approvals I want to do something to make these services work for DM because they often don’t. I try to find best practice and advocate on behalf of our community in the NHS and support organisations. I represent CureDM at Euro-DyMA which combines the experience of DM support associations across Europe.
Of course I am also here to find treatments. It is a really exciting time for new therapies with genetic engineering, new drugs and repurposing existing medicines. Those that approve them are having to change to bring them to the patients more quickly. As the Vice Chair of the MDUK Lay Research Panel and I see the amazing work that UK researchers are doing and I enjoy keeping up to date with the development of treatments and understanding of DM around the world.”
Pete is also a member of the ePAG (European Patient Advocacy Group) in the European Reference Network for Neuromuscular Diseases.
Stephen Uncles – Founding Trustee
Contact:
“Hello, I am Stephen Uncles and a Trustee of the Cure DM Charity. Both my wife Paula and my son Matthew suffer from Myotonic Dystrophy (DM1). As is common with a lot of families, Paula’s diagnosis was confirmed a couple of years ago after Matthew was born, when he was diagnosed with Congenital Myotonic Dystrophy.
With two members of our family suffering from this disease, I am very committed to this Charity and will work tirelessly to improve awareness, raise funding to allow us to support other families, as well as contribute to research into finding a cure to this disease, that has a huge impact on our lives.”
Liam Garwood – Trustee
Contact:
Joined the team in 2022. Dad to Louie and Cole, husband to Bayley.
I’m delighted to be part of the CureDM team. My son Louie was diagnosed with CDM shortly after birth along with my wife (DM1). The news came as a huge shock, as it does for many families. I look forward to contributing to the charity’s fantastic work in community support, as well as raising awareness within the science and medical community to move towards effective treatment.
Tamsyn Tait – Trustee
Contact:
Joined the team in 2022. Mum to Daisy and partner to Jonathan.
I am really excited to be part of the CureDM team. My daughter’s diagnosis of CDM1 and my own subsequent diagnosis of DM1 means I can relate to those who have the condition whilst caring for a child with the severe form. With a career as a Marketing Manager, I’m hoping I can help raise the charity’s profile and ultimately awareness for the disease. I am also keen to support others through their journey.
Wendy Greenwood – Trustee
Contact:
Joined the team in 2024. I am delighted to be joining the CureDM board of trustees. I am a scientist working in clinical development for a rare disease focussed pharmaceutical company, but my main motivation for joining the team is because my husband has DM1 and I see the challenges he faces due to the disease on a day-to-day basis.
I believe that my background in academic research affords me a good understanding of the science behind the treatments, both current and emerging. Through my experience in the pharmaceutical industry I also can also appreciate the complexities involved in bringing new therapies to the clinic.
We are currently seeing a rapid evolution in the development of therapies for both DM1 and DM2. My husband and I have three young sons, and I’m hopeful for us, and for the thousands of families like us, that the next few years will bring treatments with the potential for substantial benefit to the community.
