Volume 11, Issue 2 - Barth Syndrome Foundation

Barth Syndrome Trust
Letter from the Chair
(Cont'd from page 21)
New Neuropsychological Testing for UK Community
Barth Syndrome Trust (BST) funds Assistant Psychologist position for one day per week.
In recent clinics, parents have highlighted their concerns that many boys with Barth syndrome seem to struggle with attention.
BST is working closely with Dr. Vanessa Garratt (Psychologist at Bristol Royal Hospital for Children) who will be leading a
project to investigate this issue. From 2012, all boys and men who are interested in participating will undergo full testing at
their homes or schools, in particular to identify whether there are any areas which could require intervention. This is not a
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available.
Saving lives through education, advances in treatment, and pursuit of a cure
for Barth syndrome.
Page 22 Barth Syndrome Journal ~ Volume 11, Issue 2
Next BST Workshop for all Volunteers — We Need You!
Find out more about how you can help us achieve our mission.
Learn about our programmes: raising awareness, publications, fundraising,
administration and family services. There will also be a special focus group
for families about education. Results from this focus group will be used in the
Education Brochures we’re creating with Dr. Garratt and Debbie Riddiford.
Suzy Green hands fundraising cheques to BST Treasurer,
Gemma Wilks. (Photo courtesy of BSTrust ~ 2011)
Venue: St Mary’s Church Hall, Overton, Hampshire
Date: Saturday, 21 st January 2012
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Lunch provided
Help with travel costs
2011 Trustees' meeting.
(Photo courtesy of BSTrust ~ 2011)