Sussex charity, Keep Me Breathing, will mark Rare Disease Day with a night-time coastal relay run on Wednesday, 26 February, 2025. Five groups of runners will carry a blue beacon from Arundel Town Square to Hove Seafront, “Lighting Up for Rare” and connecting the charity’s two homes on the Sussex coast.

Beau Kent was born with CCHS in 2021 and his parents Ash and Eloise Kent from Poling, just outside Arundel, have been involved in the charity since the start, with Eloise as a Trustee. Ash is the first runner in the Run for Rare relay along with Stewart Cumming from Edgcumbes Coffee Roasters & Tea Merchant which is supporting the event.

The event will begin at Arundel Town Hall with an official Beacon lighting by Arundel Mayor, Tony Hunt, who has adopted Keep Me Breathing as one of the Town Council’s chosen charities. There will then be a procession down to Arundel Town Square where Angela Standing, the Town Crier will announce the start of the run.

The local community is encouraged to congregate in the Town Square at 5pm on Wednesday 26 February to support the charity and celebrate the start of Run for Rare in Arundel with relay handover points in Littlehampton, Ferring, Lancing, Shoreham and finishing on Hove Beach.

Councillor Tony Hunt, Arundel’s Mayor said, “We are delighted to be supporting this event at the Town Hall as we greatly admire the work of the Kent family and the Keep Me Breathing charity in their quest for a better future for all children with this rare condition. The local community has been very supportive and we know this event will be a lot of fun as well as an important fundraiser for the charity.”

Rare Disease Day

Rare Disease Day, an annual campaign which runs on the last day of February of each year, aims to raise awareness, advocate for better support and research, foster community among those affected, and promote inclusivity, highlighting the collective impact of over 6,000 rare diseases worldwide. In the UK 3.5 million people are living with a rare condition, over 70% of which are genetic and start in childhood.

Keep Me Breathing

Keep Me Breathing was set up in 2022 to address unmet needs of children born with the rare breathing condition known as Congenital Central Hypoventilation Syndrome or CCHS which affects the body’s ability to breathe when asleep.

“Having a rare disease diagnosis is incredibly tough because so little is generally known about the condition which means you don’t have access to the same diagnostic tools, information, specialist care or treatments that you can expect from a non-rare condition. The investment just isn’t there for rare conditions.” said James Oakley from Hove and Founder of Keep Me Breathing as well as Dad to 3 year old Casper who also has CCHS.

Children with CCHS don’t have the automatic function to breathe when they sleep and are at risk of sudden death without artificial life support.  The standard treatment is life-long mechanical ventilation but Keep Me Breathing aims to change this with an advanced technology, a breathing pacemaker device that will be fitted into the diaphragm to simulate natural breathing.  The device aims to replace the ventilator, providing untold freedom to families like the Kent family and all those across the country and worldwide who are seeking independence and a better future for their children.

Donate & learn more

Any donations to the charity are gratefully received and can be given via the Run for Rare JustGiving page www.justgiving.com/team/runforrare or through the charity website www.keepmebreathing.com.