Yoram Allalouf

Hassan and Yoyo Marathon Run

Fundraising for Hope for HH UK
£117,468
raised
by 133 supporters
Donations cannot currently be made to this page
Event: London Marathon 2022, on 2 October 2022
Hope for HH UK

Verified by JustGiving

RCN 1164565
www.hopeforhh.org
We raise funds for brain tumour research to improve the lives of sufferers in the UK

Story

After 11 years, we have decided to do it again! We are going to run the London Marathon on October 2nd 2022.

Our inspiration is a charity called ‘Hope for HH’ and our amazing girl, Lucy.

HH, (Hypothalamic Hamartoma), is a tumour located in the centre of the brain that creates a variety of complications. It forms during gestation and is a very rare condition that is commonly associated with a spectrum of clinical, endocrinologic, and psychosocial comorbidities, including refractory epilepsy.

Our Lucy was born with HH and has been fighting every day for 16 years with all the different complications that this condition has thrown at her.

Hope for HH, helps people with HH all around the world. It is also the only organisation that supports families an patients with this condition and ensures that doctors and healthcare providers share ideas and work on solutions (treatments and research) to fight this terrible condition.

Inspired by Lucy and this organisation, we have decided to try and raise as much as
possible for Hope for HH.

We ask you our friends to please support us and this incredible organisation.

About the charity

Hope for HH UK

Verified by JustGiving

RCN 1164565
www.hopeforhh.org
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!
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Donation summary

Total raised
£117,467.98
+ £5,800.50 Gift Aid
Online donations
£80,217.98
Offline donations
£37,250.00

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