CCHS UK

CCHS UK offers support to families, in the UK, affected by the extremely rare genetic condition Congenital Central Hypoventilation Syndrome (CCHS).

[CCHS UK @cchssupport]

Out of a global population of over 8 billion, CCHS affects around 1,500 people, so it definitely qualifies for #RareDiseaseDay

This special day is focused on raising awareness of rare diseases and their impact on people's lives.

And it's on 29th Feb - the rarest day of all! 💙

[CCHS UK @cchssupport]

Huge congrats to Darren, who ran the Great South Run today for CCHS UK. Here he is with little CCHSer Charlie, who cheered him on at mile nine!

There's still time to sponsor him, so please do!

@Great_Run #fundraising #GreatSouthRun #GSR

https://t.co/tEJglnUE4X

[CCHS UK @cchssupport]

Huge thank you to this wonder woman, Sarah Page, who has raised nearly £11,000!

[Sophie Wagstaff @SophWag29]

Got a bit emosh making this video. Here's my best friend, the @centurionrunner women's South Downs Way winner, talking about her reason for running.

@cchssupport #RareDisease

[Sophie Wagstaff @SophWag29]

My best mate and precious little boy couldn't be more deserving of this front page splash in The Portsmouth News! Pagey is running 100 miles along the South Downs Way and has raised over £7k for @cchssupport

She's a legend and an inspiration!

@portsmouthnews @centurionrunner

[Chris Wagstaff @wagstaffchris]

The incredible Sarah Page. Running 100 miles along the #southdowns for @cchssupport https://t.co/MmhBEhrXMt

[CCHS UK @cchssupport]

Well done to fundraisers this weekend who organised a truly hair-raising day!

In collaboration with @UniofNottingham rugby teams, Jonny Felstead raised over £1,000 for CCHS UK by cutting hair & doing a BBQ.

Well done all - we love the #greenandgold hair! 💇‍♂️

@_unruc @UoNSport

[CCHS UK @cchssupport]

Today is International Nurses Day. A day to celebrate all the wonderful nurses out there who care for people with CCHS 💙

#IND2023

[Sophie Wagstaff @SophWag29]

Fantastic to see an article about my best friend in the @portsmouthnews

She is running 100 miles along the South Downs Way in less than a month! EEK!🏃‍♀️

Raising money for #charity CCHS UK which supports extraordinary people like my son

@cchssupport

https://t.co/woS59t94iw

[BBC Hereford & Worcester @bbchw]

A woman from Redditch is fundraising for life changing surgery for her daughter.

https://t.co/KvxLyMuTtW

https://t.co/KvxLyMuTtW

[CCHS UK @cchssupport]

Listen to this fantastic interview with six-year-old Sadie's parents. They're talking about the operation she's due to have in a couple of weeks, which they hope will give her more independence and a better quality of life. Tune in at 3:10:30:
https://t.co/6WcOhekpa6

[CCHS UK @cchssupport]

Congrats to Pete Holmes from @netmattersltd who ran the #LondonLandmarksHalfMarathon yesterday! 🏃🏻‍♂️

@LLHalf #LLHM2023 #MedalMonday

[CCHS UK @cchssupport]

Huge congrats to Chris Gulliver, Elliott Peacock and Pete Holmes from Netmatters. They ran the #londonlandmarkshalfmarathon today for CCHS UK and totally smashed it!

@LLHalf @netmattersltd

Well done guys! 👏👏👏

There is still time to donate: https://t.co/Jg6GgcaR4n

[CCHS UK @cchssupport]

We're very excited to announce our new website has gone live! Please click the link below to check it out 👇

https://t.co/6xRDAZbdwc

[Sophie Wagstaff @SophWag29]

A special shout out to my best mate who works full time, has young kids, and yet is squeezing in some gruelling training for a 100-mile running race to raise money for @cchssupport

What a legend & all-round good egg!🥚

#internationalwomensday #iwd2023
Fundraising link in bio

[CCHS UK @cchssupport]

We're offering oxygen concentrator grants for families living with CCHS, so they don't have to worry about the huge extra cost of oxygen, which can be prohibitively expensive.

We hope families living with CCHS can enjoy a well-deserved holiday!

[All On The Board @allontheboard]

Today is Rare Disease Day and it’s a day to raise awareness for the 300 Million people in the world with over 6000 rare diseases.
If you or a loved one have a rare disease write it in the comments and make it seen.

#RareDisease #RareDiseaseDay #RareDiseaseDay2023

[Rare Disease Day @rarediseaseday]

Are you ready to share your colours 💚💙💜 this #RareDiseaseDay?

Show your support by sharing our pledge cards on your social media channels. They are available in 8 languages!

👉 https://t.co/lLgsmLrUvN

[Sophie Wagstaff @SophWag29]

I'm so chuffed to see my best friend's epic challenge on the front page of the Petersfield Post. She's running 100 miles for the charity that supports families like ours. What a legend/nutter!

@postpfield @cchssupport @centurionrunner @hoka 🏃‍♀️

https://t.co/joFjPHpp47

[CCHS UK @cchssupport]

Wow, this is awesome!

[Sophie Wagstaff @SophWag29]

My incredible friend has signed up to do an epic 100-mile @centurionrunner challenge to raise money for @cchssupport, which supports families like ours.

Listen to the video with sound on - it's quite sweet.

And please sponsor her: https://t.co/qpuOzI6obL

[CCHS UK @cchssupport]

Charity Christmas cards available! Thank you @Hawkins_Brown for the design and production of these beautiful cards 💙

Please contact [email protected] to order