Yoyo, Marc and Jose

Marc Iarchy is raising money for Hope for HH UK
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London Marathon 2022 Β· 2 October 2022 Β·

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

After our earlier, highly successful, drive to help Ukrainian refugees, this time, we decided to run the London Marathon on October 2nd (Yoyo) and the Lisbon Half Marathon on October 9th (Marc and Jose).  Our inspiration is a charity called "Hope for HH".  

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.  

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

Inspired by their work, we have decided to try and raise as much as possible for Hope for HH.  We ask you and your friends to please support us and this incredible organisation.  In addition, World Star Aviation will match every penny raised, thereby doubling the potential donation. 

We thank you very much for your support.

Yoyo, Marc and Jose

Donation summary

Total
Β£2,347.56
Online
Β£2,347.56
Offline
Β£0.00

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