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Sarah Grudzien

Sarah's Page

Fundraising for FIBROUS DYSPLASIA SUPPORT SOCIETY
£380
raised of £250 target
by 21 supporters
Donations cannot currently be made to this page
Event: 2018 Bank of Scotland Great Scottish Half Marathon, on 30 September 2018
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 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 in time.

Last year we raised a huge amount which allowed the charity to fly over specialist doctors and surgeons from America to the annual meeting, which provided much more knowledge and insight to this unknown disease.

This year I am by myself and despite having one half marathon under my belt I still am not a very motivated runner so I really am working for these donations! A massive thank you for anything you can donate, it is so so appreciated!!

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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
£380.00
+ £95.00 Gift Aid
Online donations
£380.00
Offline donations
£0.00

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