Sarah Grudzien

Hollie's Page

Fundraising for FIBROUS DYSPLASIA SUPPORT SOCIETY
£2,009
raised of £1,000 target
Donations cannot currently be made to this page
Event: Great North Run 2017, on 10 September 2017
Participants: Gillian Findlay
We support sufferers of bone disease to help improve lives and understanding

Story

We are raising money for the Fibrous Dysplasia Support Society and Rudy (rare disease researchers) to help fund research into an extremely rare disease.

Fibrous Dysplasia affects only 1 in 15-30,000 people, but at a very young age Hollie was diagnosed. Over the past couple of years this has proved to be a difficult journey, with Hollie sadly losing her sight in one of her eyes. However, thanks to the ENT Team at Birmingham Children's Hospital we managed to save the sight in her other eye which was also affected, although this came with a number of intense operations for Hollie. We are still not out the woods yet and face challenging times ahead with more surgeries ahead. 

The charity host an annual meeting that allows sufferers from all over the country to attend with their families, to get some support and a better understanding of the disease. This year, FDSS are aiming to raise £10,000 to fly over doctors and surgeons from America who have a lot more experience in this disease where they can shed some further insight and knowledge.

As I am sure most of you know, we are not runners so anything you can give to motivate us and help make this run almost bearable is really, really appreciated! Thanks for taking the time to visit our JustGiving page, we better get training...

We thank you from the bottom of hearts for any donation you can give 💛

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About the charity

The Fibrous Dysplasia Support Society (FDSS) was formed in 2007 by a group of patients, and their carers, who are affected by Fibrous Dysplasia, McCune Albright Syndrome (MAS) or Cherubism. It exists to provide information and support by sharing our knowledge and experience of the condition.

Donation summary

Total raised
£2,008.41
+ £327.50 Gift Aid
Online donations
£2,008.41
Offline donations
£0.00

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