Florence Osborne

Tri-ing for Hugo & AGSD UK

Fundraising for Association for Glycogen Storage Disease (UK) Ltd
£2,611
raised of £1,000 target
Donations cannot currently be made to this page
Event: Outlaw Half Nottingham, on 19 May 2024
We support children and adults with GSD to improve their chances of a good life.

Story

9 of us (Flo, Vanessa, James, Hilary, David, Stacy, Natalie, Dale and Ellie) will be making up 3 teams and taking on the Outlaw Half Triathlon to raise money for Association for Glycogen Storage Disease UK (AGSD UK).

Hugo is my 4 year old son. In May 2020 after weeks in hospital, countless blood tests and a genetics panel, he was diagnosed with Glycogen Storage Disease (GSD) type 3b. GSD is an 'ultra-rare' inherited metabolic disease of the liver. Hugo’s liver can’t release the glucose to provide him with the energy he needs for day to day life. Without frequent feeds around the clock with a specific, strict diet plus a modified cornstarch drink feed during the night, he suffers from severe hypoglycaemia. He will have regular blood checks, liver scans and regular re-evaluation of his emergency care plan and diet for life. There is no cure for GSD and it’s potentially life limiting consequences.

We are raising money for The Association of Glycogen Storage Disease UK, a UK based charity who support those with GSD through diagnoses, provides up to date information from relevant medical professionals and run a yearly conference to bring together families, clinicians and academics. Any money we raise will contribute to the amazing work AGSD are currently doing.

Thank you from all of us!

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About the charity

Supports people with glycogen storage diseases, very rare genetic disorders of metabolism. Offers website, newsletter, conference/workshops. Promotes understanding of and research into GSDs which are disabling and life-limiting. www.agsd.org.uk Fundraising advice: info@agsd.org.uk

Donation summary

Total raised
£2,610.04
+ £521.25 Gift Aid
Online donations
£2,610.04
Offline donations
£0.00

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