As a volunteer run charity we could not do the work without the help of our fabulous fundraisers who work hard to raise both funds and awareness for IIH UK, while sometimes taking on personal challenges at the same time.

See below some of these wonderful people.  If you have taken part in a fundraising event and would like it listed here please email This email address is being protected from spambots. You need JavaScript enabled to view it. and tell us all about it. 


Dave and Andrew set themselves a challenge to climb the 3 Peaks. Ben Nevis, Scafell Pike and Snowdon. They did it in under 24 hours. Thanks Lads, an amazing feat raising £310.00

Jake Harvey's mum was diagnosed with IIH 6 years ago and he wanted to do something to try and help. He undertook a 25 mile trek (which turned into 30 miles!) and has raised £1117.00!  Jake you rock!. Thank You! 

Hannah and Daniel ran the Manchester 10k for us raising £360.00

Thank you! 

Maisie led some fundraising at her school as the charity is close to her heart. Thank You Maisie, you're a star! 

This year we launched our 'Active 4 April' Campaign, encouraging IIH'ers to get active. Penny took part and did 1 belly dance a day throughout April and raised £62.00. Thank you Penny!

Stephanie also took part in Active 4 April, her goal was to walk 12,000 steps a day. We are happy to say she succeeded and raised £655 in the process. Well done Stephanie! 

Samantha Dixon did the Midlands Tough Mudder raising £1000! Thank you Samantha! 

Martin Venus ran the London Marathon. Here he is with his wife Cherie, who has IIH.  Thank You Martin you raised £236.50! 

IIH sufferer Lisa works from home, she held a games night for us and raised £50.00, Thank you Lisa

   Tom held a 24 hour gaming marathon again this year and raised £355.22.  Thank you Tom, you're a star!

Charlene Atkinson and members of Towrags Trike and Bike Club, IOW raised £342.07. Thanks guys, your Rock! 

   Lisa organised a Wear odd socks or green and blue day for us on Rare Disease day and raised £26.00 Thank you Lisa

A big shout out to Rachel Mark. Rachel had a stall at Knowhead presbyterian Church Fayre. Thank You Rachel. 

Shelly Williamson held a raffle for a House of Commons Christmas Pudding donated by her local MP Sharon Hodgson raising £60.  

IIH Sufferer Catherine and her mum climbed up Corn Du AND Pen Y Fan. Congratulations and well done, You did it! raising £200 in the process. 

Letty held a raffle for an IIH UK Hoodie and raised £36.  Thank you Letty! 

 Leah and her school friends held a series of fundraising events for us and raised £229.00  Thank you Leah, you're a star!

 A HUGE Thank You to everyone who shared our fb posts, organised/took part in or supported fundraising events and to all those who donated via our HOPE12 text code. 

During September Awareness month you raised £3612.23! AMAZING, THANK YOU! 

Our fundraising volunteer Lisa Charlish held a 'Wear Blue or Green'event during September Awareness Month raising £69.00 Thank you Lisa. 

Hayley Norton held a pamper session for us and raised £459.00.  Thank you Hayley

A big Thank You to Gwyneth Spellar who did a head shave for us raising £470.00

Thank You Gwyneth. 

Eloise took part in the London-Brighton bike ride and raised £30.00  Thank you Eloise.

Each year on 12th September (the anniversary of her first surgery) Jaqui Turp holds a 'Raise your glass for IIH' event on social media. This year she has raised £285.90.

Thank you to everyone who took part. 

Katie Williamson, Daughter of IIH UK Chair Shelly completed the Great North Run in a time of 2:39. Katie was diagnosed with IIH in 2007 age 13. 10 years, countless medications and 6 surgeries later here she is running her legs off for IIH UK. 

Thank you Katie, You're a star! 

A big Thank you to Sarah Vose whose friend Steph has IIH, she ran the Abersoch Half Marathon and raised £731.33

Cerys, Jenna, Jodie, Jonathan, Sarah, Stephen, Stefanie and Carly did the Welsh Three Peaks challenge and raised £1284.50.

Thank you QW Mountaineerers, you guys Rock! 

The White Lion in Faversham held a quizz night and raised £33.00!

Thank you!  

Rachel and Karl walked the Henley 10k and raised £575.00 

Thank you!

Once again Andrea May made a beautiful shawl which she raffled for us and raised £59.00.

Thank you Andrea! 

Laura Kerby and her sister in Law Katie completed the British 10K and raised £706.93. Lauras son Fin has IIH but that didn't stop him going along to cheer on his mum. 

Tim Porter ran the Potters 'Arf Marathon and raised £1218.38.

Thank You Tim! 

Matty Quayle and 4 friends did a 25 sponsored walk for their friend Charlene who has IIH. 

They raised £1131.13, Thank you Matty! 
A big Thank You to Emma and her family, they held a small raffle at the Christening of their daughter and raised £100.00 Billy, the partner of our Secretary Norma-Ann Dann did the Wirral Coastal Walk for us again this year and raised £244.00
Clair and Gary Dart competed in the 'Just Walk' event and raised £1639.80.
Thank You Clair
Last year Tom Perret raised funds with a 24 hour gaming marathon, he had such a blast he decided to do it all again this year and raised £588.00  

Thank You Tom, you Rock! 
A huge Thank You to Emma Nagler. 13 year old Emma, a keen Golfer has an older sister with IIH. Emma played 48 holes and raised £1140.00
Thank You Emma, you're a star! 
Melissa-Jane Collins ran the Nuclear Rush and raised £345.00. Thank You Melissa
Thank you to Louise Smith and her Mum who did the Kilt Walk and raised £35.00 Thank you David Dunn. David ran the Brighton Marathon and raised £332.00



Lizzie said ‘I'm Running 5K for IIH UK because I want to help people like my mum to get better’. MumLizzie's 5K run Zoe said ‘she was such a brave little girl to complete the run on the Sunday morning as I was taken into hospital on Saturday and so was unable to run with her. Her Uncle Alex jumped in and drove up from Oxford to run with Lizzie, whilst her Dad and little brother cheered her on’.

Lizzie has raised £163 so far and Zoe hopes there may be more to come! A big thank you to Lizzie and her family.







  Revenue Services at Falkirk council held a dress down day and raised £62.00
  Ashton & Moore Ltd in Birmingham held a Christmas raffle and raised £600.00
  Great Waltham Parish Productions held a fundraising event and raised £150.00



IIH UK is members of the following organisations.