Families with a child who has a GSD are often isolated, and even more so when they are few and far between, as in the North East of England.
The AGSD-UK Care Advisor joined with dieticians Alice Runnacles and Sandra Adams at the Royal Victoria Infirmary, Newcastle, to offer a small, fun family day for GSD on Saturday 13 July. Dr Mark Anderson attended and was able to give extra time for informal chats with families.
Most importantly, Ciara, now aged 19 and studying nutrition at Sheffield University, gave a passionate and uplifting talk about moving away from home living with GSD1a. Everyone was rapt, listening to how she copes amazingly well with her condition and studies.
Families explained tips that had helped them, shared ideas and commented on the value of the AGSD-UK conference.
Jane Lewthwaite from AGSD-UK obtains grants for the Family Days to ensure there is craft, entertainment, information resources for everyone and a GSD friendly lunch too. This event was sponsored by a grant from Edward Gostling Foundation and we are very grateful for their support.
Further Family Fun Days in 2019 will be held as follows:
- Saturday 19 October – Birmingham Children’s Hospital
- Saturday 9 November – Great Ormond Street Hospital, London
Main photo: Some of the family members and staff together.
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