Kamie's fundraiser for Hope for HH UK. 60 MILES FOR SEPTEMBER!

Kamie Wood is raising money for Hope for HH UK
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60 MILES FOR SEPTEMBER! DAILY TWO MILE WALK! Every day in September! Total 60 miles! for HH CHARITY. · 1 September 2025

Hypothalamic hamartoma is a rare congenital brain lesion that causes epileptic encephalopathy. Symptoms include laughing seizures leading to severe cognitive and behavioural problems similar to autism (and so HH is sometimes misdiagnosed as autism). Our small charity is entirely volunteer run - the trustees comprise HH sufferers and parents determined to increase awareness of, and therefore accurate diagnosis and proper treatment of, this complex syndrome, which is often missed by paediatricians and radiologists. Our personal outcomes have been varied, but each of us remains committed to improving detection rates and finding a cure. Every penny raised is spent on research or patient support. The next generation is already benefitting, with children starting to achieve some exceptional outcomes through new technologies supported by us. Our most important achievement is to have facilitated communication between brilliant but disparate experts from all corners of the world; they are now working together - including as part of our Medical Advisory Board - better to understand and treat this devastating syndrome. Laser Ablation Surgery, facilitated by Hope for HH, recently commenced in Great Ormond Street Hospital, bringing more hope to UK sufferers of this and other focal epilepsies. We are committed to genetic research projects to understand more about aetiology, and hosted our fifth international symposium in Sept 2022. We depend entirely on your support - thank you!

Story

60 MILES FOR SEPTEMBER! Charity Hope for HH.

I am walking 60 miles in September. 2 miles a day! My chosen charity is Hope for Hypothalamic Hamartoma. A charity close to my heart due to my 15 year old daughter being born with this condition. Emily was born with a benign brain tumour which causes multiple challenges, including epilepsy. She has also struggled with nerve damage since Covid two years ago, which has now resulted in her being in a wheelchair. She is super strong, brave and my absolute warrior 🩷

I would be grateful for anyone who would like to donate to this lovely charity. Even if it’s small.

I am doing this challenge with one of my besties who is also raising money for a charity close to her heart. ROAD PEACE. Providing information and support services to people bereaved or seriously injured in road crashes, and engage in evidence-based policy and campaigning work to fight for justice for victims and reduce road danger. Sadly Becky lost her dear mum to a tragic road traffic accident over a year ago and this is fantastic charity who also needs support. Link below to Becky’s just giving page.

https://www.justgiving.com/page/becks-roadpeacewalk?utm_medium=FR&utm_source=CL

We would both appreciate your support giving to these two very worthy charities.

Thanks for taking the time to visit my JustGiving page.

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Donation summary

Total
£250.00
+ £55.00 Gift Aid
Online
£250.00
Offline
£0.00

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