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. Co-Founder of The Fight Fund and Cure DM CIC - Emma is dedicated to supporting families and finding a treatment.

Dregan was diagnosed with CDM in 2014, the day before his 15th birthday! 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 this disorder, 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 I think 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! 

You can contact me: emma@cmmd.uk

 

* DM Adult Patient representative for TGDOC

* IMI Patient representative

* DM Patient representative for PREFER

 

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 is a EURORDIS-trained rare disease patient advocate. She 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 CDM, 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. She is in the final stage of an MSc in genetic and genomic counselling.
 
Dr. Ali Kay MBPsS FRHistS 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."

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.