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. 



Our Christmas Raffle raised £118.00. Thank You.


facebook   A huge THANK YOU to everyone who did a Birthday Fundraiser for us on Facebook during 2019. Between you, you raised a whopping 



Steph daughter, Lauren and her school friends from St Aidan's RC Primary School (with the help of their teacher Mrs Rye) raised £34.45 by selling snacks and second hand toys during break times. Additionally, they raised IIH awareness during a school assembly. Thank you Lauren, You’re a star! 


Tierney Keinch held a Quiz night for us and raised £611! Thanks Tierney!


Frances Cardwell & her mum, Brenda, raised £350 via JustGiving. Over the month of November they aimed to completed 26miles. Frances ran the 26miles over a month, whilst her mother walked 26 miles. Thank you both! 

georgie  Georgiie took part in the Glow in the park 5K and raised £22.50. Thanks Georgiie!

This is the 4th year that Tom has undertaken a 24 hour gaming marathon for us.  This year he raised £760 bringing his total to around £2800!  Well done Tom! You Rock!! 

 catherine Catherine Maguire’s daughter has IIH so she ran the Cardiff Half Marathon to raise funds for us. Thank you Catherine.

Thank you to everyone
who took part in our
Christmas Raffle.  You
raised £236.00! 


A big Shout Out to Benjamin Britten Academy of Music and Mathematics, year 11 students did a sky dive and chose to donate £300 from their
fundraising to us!


thank you

Thank you Mr and Mrs Davies from Buckinghamshire for your kind donation. 


For her birthday Verity asked her friends to make donation to us raising £ 275.00

Thank you Verity, and Happy Birthday! 


Nicola's son Jack was diagnosed with IIH last year. She chose to hold a birthday fundraiser for us on JustGiving and raised £30.00. Thank you Nicola, you're a star!  

thank you A great big THANK YOU to everyone who has held a birthday fundraiser for us on Facebook, to date you have raised a whopping £2191!!  You guys Rock! 

Louise raised £32 in her beauty competition, giving away a set of nail extensions.  Thank you Louise

billy Billy took part in the Wirral Coastal Walk again for us this year and raised £322.  Thank you billy! 

Naomi Cotton gave up chocolate and raised £49.64!  Now that was a tough fundraisier, well done Naomi. 

lauren Lauren Westie's Sky Dive has so far raised £562.48! Thank you Lauren, you're much braver than we are. 

Joanne Langford ran the Torbay Half Marathon for us in June raising £301.97!  Thank you Joanne, you rock! 

laura Laura and Katie ran the Regents Park Summer 10K raising £571.86!  Thank you! 

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 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 £1232.00!  Jake you rock!. Thank You! 

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

Thank you! 

maisie 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!

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

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

lisa   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. 

xmas 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 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!

rock  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 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. 

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

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. 

gnr 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

welsh 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! 



Lizzie said ‘I'm Running 5K for IIH UK because I want to help people like my mum to get better’. Mum 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.

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