Gary Bartlett

Elodies 20 mile cycle for SWAN UK

Fundraising for Genetic Alliance UK
£1,521
raised of £250 target
Donations cannot currently be made to this page
20 mile cycle, 28 April 2023
On 28 April we will be celebrating our 11th annual awareness day, Undiagnosed Children's Day - raising awareness of undiagnosed genetic conditions and funds to support children and their families affected by them.

Story

Elodie is an amazing, loving, little lady with a big heart and very happy nature. Unfortunately Elodie was born with a long list of difficulties but no formal diagnosis. As a family, we attend a lot of hospital appointments and have multiple specialists involved to make sure Elodie gets the help she needs. Being a parent to Elodie has been isolating at times and we have found it difficult to come to terms with what the future may hold for our beautiful daughter. That's why we want to raise awareness of such a brilliant cause that brings families together and helps others in our situation.

SWAN UK (syndromes without a name) supports families affected by a genetic condition so rare it often remains undiagnosed. They are the only dedicated support network for SWAN families in the UK and are run by the charity Genetic Alliance UK.

SWAN UK's aim is that every family gets the support they need, when they need it, regardless of whether they have a diagnosis or not. They work with UK based families of children and young adults up to 25 years old who are searching for a genetic diagnosis - bringing families together in a supportive community who understand the unique challenges of life without a diagnosis.

Thanks for your support

Gary, Lucy, Elodie and Isadora

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About the campaign

On 28 April we will be celebrating our 11th annual awareness day, Undiagnosed Children's Day - raising awareness of undiagnosed genetic conditions and funds to support children and their families affected by them.

About the charity

Genetic Alliance UK

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RCN 1114195
We are a national alliance of over 220 charities and patient support groups. Together we advocate and campaign for the 3.5 million people in the UK with a rare, genetic or undiagnosed condition - improving diagnosis, care coordination and treatment options. We run Rare Disease UK and SWAN UK.

Donation summary

Total raised
£1,521.00
+ £302.75 Gift Aid
Online donations
£1,521.00
Offline donations
£0.00

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