120km for CASK on Rare Disease Day

Lt Col. Hattersley running across England on Rare Disease Day

Gareth with his niece Sarah

On Rare Disease Day, February 28th, Lieutenant Colonel Gareth Hattersley will be running 120km from Fulwood Barracks, Preston to Gaza Barracks, Catterick Garrison.  Gareth will be attempting to run the 120km route, supported by twelve other members of his Regiment, within 24 hours. The run will mark the disbandment of 3 Medical Regiment, which Lt Col Hattersley is Commanding Officer of, and ahead of redesignation of 5 Medical Regiment later this year. This historic event aims to raise money for three charities, with Gareth choosing CASK Research Foundation as his personal charity. Gareth is running for a better quality of life for his niece Sarah, the five year old daughter of his identical twin brother Craig. She tragically suffers from a debilitating, very rare genetic disorder known as MICPH or CASK.


Sarah's fifth birthday

“My niece is really wonderful, so happy and warm-hearted. It has been difficult to watch as her development has been disrupted and her health deteriorates,” says Gareth.  His sister-in-law Laura set up the charity CASK Research Foundation in 2022, which raises money for valuable research into CASK gene disorders. Sarah‘s rare gene mutation affects brain development and is one of only 230 diagnosed cases world-wide. The effects are devastating, leading to learning difficulties and problems with movement and coordination. Sarah is unlikely to ever be able to walk or talk, she has a feeding tube and her frequent epileptic seizures are particularly difficult, requiring emergency hospital admissions.


Gareth, who himself is a father to two year old Benjamin, explains why he decided to take on this challenge: “As we disband, 5 Medical Regiment will not only be taking our place in the line to fulfil this role, but will also be redesignated as 3 Medical Regiment. Hence, I though it a fitting tribute to all those who have served in the Regiment for our flag to be travel to Catterick in true light role fashion, i.e. on foot.”



The route is a mix of footpaths and roads, initially following the course of the River Ribble out of Preston, passing through the towns of Clitheroe and Settle before heading across the Pennines. Crossing the River Ure in Aysgarth, into Catterick Garrison to end in Gaza Barracks.

Hattersley family

Running on Rare Disease Day, Gareth describes the extra complications that comes with living with a rare disease: “Due to the rarity of the condition, the experience of the medical staff treating Sarah has varied considerably. For my brother and sister-in-law it has been a real fight to ensure she gets the treatment she needs. The CASK Research Foundation was founded as a result of ground-breaking work on CDKL5 deficiency disorder, another X-linked mutation. There is real hope that with the right support CASK can be treated with similar therapeutics.”



Having an identical twin whose parenting journey has been very different to his own has particularly highlighted the urgency for help. “By supporting this cause I hope I can do something that will support other families in the future or even prevent this devastating condition affecting anyone else.  It spurs me on to know I am running for such amazing good causes. I initially hoped to raise £500 for each charity, and so far through the generosity of my friends and family we have achieved that. It would be great if we could raise so much more.” The other charities being supported are British Heart Foundation and The Army Benevolent Fund.

“It is inspiring to see how much my brother and sister-in law love their daughter, and the efforts they will go to in making her even the slightest bit more comfortable and happy.“

To donate to Gareth’s run for CASK, go to https://www.justgiving.com/page/serpentflagultra-caskresearchfoundation

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