Charlotte Holden

Riding for Miles: Tour of Flanders

Fundraising for SynGAP Research Fund UK
raised of £10,000 target
by 154 supporters
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SynGAP Research Fund UK

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We raise funds for SYNGAP1 research to treat SYNGAP1 encephalopathy


On 2nd April 2022, Ray and 3 of his closest friends Mark Targett, Pete Hendrick and Tom Margham rode the gruelling 217km Tour of Flanders from Antwerp to Oudenaarde for the SRF – SynGAP Research Fund UK. 

Ray’s eldest son Miles was born in 2009 and was diagnosed with autism at 3. Miles then later received the diagnosis of Syngap1 Syndrome in 2018 when he was 9. Miles, like most of the other 985 diagnosed patients (Dec 2021) has a collection of neurological difficulties. SynGAP1 Syndrome, like autism, is a spectrum condition meaning that some of those in the community are very severely impacted by this on a daily basis and families are struggling to cope. Challenges can include mild to severe intellectual disability, epilepsy, autism, sleep issues, hypotonia (low muscle tone), apraxia (delayed/ no speech), impulsivity and aggression.

But the good news – now we have a diagnosis, we know where the problem lies – and more importantly that something can be done about it. As the SynGAP1 community grows, as does the drive from the families affected to find an answer – and that is happening right now.

The SynGAP Research Fund (SRF) was originally set up by a family in the US but has now also launched in the UK as SRF UK. It's aim is to work together with families, researchers and clinicians to accelerate the science to rectify these major SynGAP1 challenges.

Since finding the SRF, Ray says life has been injected with new hope and purpose. Advancements in genetic testing and therapies that actually restore the SynGAP protein that Miles and so many others are missing, are due to be trialled in US and further afield next year, with the aim to bring these trials to UK sometime after. These are exceptionally exciting times. The trials and research both planned and currently in process would change the lives of those with SynGAP1 Syndrome, and their families indescribably.

Mark, Pete and Tom have always been incredibly supportive of Ray and his family and are big supporters of Miles who they have known since birth.

Mark says

‘We’ve watched Miles grow into an amazing and funny young man. The journey has, and continues to be, extremely hard - both for him and for the rest of his family. They amaze me with their energy, positivity and resolve. Ray and Charlotte have had to become deeply knowledgable in a wide range of specialist topics from genetics to epilepsy to help Miles develop in all areas of his life making him the superstar he is today. We’re really looking forward to raising some funds for the SRF UK, a cause which is very close to all of our hearts’

But as always, funding is what is needed to support SRF UK – so please help us by donating here. All money raised will go into the cutting edge trials and research that will massively impact those affected by this very challenging condition. Thank you so much from Ray, Ray’s wife Charlotte, Miles’s brother Theo, Mark, Pete and Tom – and of course from the man himself Miles.

About the charity

SynGAP Research Fund UK

Verified by JustGiving

RCN HMRC Registered
Our mission is to support the research and development of treatments, therapies and support systems for SYNGAP1 patients worldwide.

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