Meet the team

They say it takes a village to raise a child.....

We are a group of parents and carers, all with something in common. We identified there was a need for greater support for families living with Myotonic Dystrophy, particularly the children with CDM and childhood onset. 

We all experienced different things when our diagnosis was received, and we all needed support, friendship, and someone to talk to when things got tough. Someone who understood. We needed fun and positiveness for those rainy days, the hope for a treatment and CURE for our loved ones!

We're doing what we can - and we hope you will be part of it. Between us we cover a range of situations, maybe you can relate and would like to talk to someone who is going through the same as you. Feel free to message us, we'd be happy to talk.

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Emma-Jayne Ashley

Trustee

Emma-Jayne is married to Pete, and is mum to Dregan, Xander and River. She works full time as a DM Specialised Personal Care Assistant and Team manager. Emma is dedicated to supporting families, improving quality of life and finding a treatment for DM.

She was co-founder of the Congenital Myotonic Dystrophy Fight fund (an MDUK family fund) which ran from 2015-2020, is a Founding Director of Cure DM Ventures CIC (2017 to present day) before becoming a Founding Trustee of Cure Myotonic Dystrophy UK Charity in 2020.

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"

No-one can go through it alone, and we don't have to! 

 

Along with her roles above, Emma is proud to support the community by being:

* DM Child Patient representative for TGDOC

* IMI Patient representative

* DM Patient representative for PREFER

* Sits on the steering committee for the UK DM Patient registry

Stephen Uncles

Trustee

"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."

Dr Alison Kay

Trustee
Ali completed her MSc in genetic and genomic counselling, and is a research genetic councillor at the University of Oxford. She is also a EURORDIS-trained rare disease patient advocate.
 
Ali has been part of the rare disease community since 2013 when her youngest son was diagnosed with a rare form of congenital muscular dystrophy.
 
In addition to her role as a trustee for Cure DM, Ali is a Muscular Dystrophy UK Lay Research Panel member and also sits on their Content Advisory Group. In addition to her advocacy work, Ali was for many years an academic researcher on themes such as family and  entrepreneurship and work and identity. Her contribution and community work were recognised with elected fellowship of the Royal Historical Society and Royal Society of Arts.
 
Seeing first hand the huge challenges faced by the rare disease community, Ali has redirected her focus to supporting both understanding of genetic conditions and psychological wellbeing for patients and their families.
 
Dr. Ali Kay
MA (hons) MA MSc DPhil (Oxon) MBPsS FRSA
 

Peter Ashley

Trustee and Chair

"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.

Peter Ashley MSc

Karl Kibble

Trustee

Karl joined the team in 2017 as a director of Cure DM Ventures CIC, and is also trustee for Cure DM Charity.

Having a son with Duchenne Muscular Dystrophy gives Karl a personal insight into the difficulties facing families with neuromuscular diseases.

Karl also runs Olly's Fund - raising funds for research into Duchenne Muscular Dystrophy.