Epidermolysis Bullosa (EB)
Epidermolysis Bullosa (EB) is a rare disease whereby the skin blisters and peels at the slightest touch. Living with EB has been likened to living with third degree burns. It is very painful, and sufferers must be bandaged every day with dressings to protect and medicate their wounds. EB is characterised by skin fragility with blister formation occurring spontaneously or following minor trauma. EB can be broadly divided into three major catagories: Simplex, Junctional and Dystropic. These catagories can be further subtyped based on inheritance and clinical features.
It is estimated that there are around 1,000 people in Australia who have some form of EB and over 500,000 worldwide. It occurs in all racial and ethnic groups and affects males and females equally. EB is not always evident at birth. Milder cases of EB may become apparent when a child crawls, walks, runs or when young adults become more physically active.
Money raised from Brighter Days has assisted individuals and families all over Australia living with EB. It has provided them with many items including wheel chairs, ramps, specially made clothing, shoes, air conditioners, medical equipment and supplies. Brighter Days has also contributed to the EB Nurse Program which employs dedicated part-time EB nurses in Victoria, Queensland and New South Wales. Debra Australia is a not for profit organisation and does not receive any direct government funding.
Website : www.debra.org.au
The Cooper Trewin Memorial SUDC Research Fund
The Cooper Trewin Memorial SUDC Research Fund was established after the tragic passing of Cooper Trewin on 6 February 2010 aged 16 months and is supporting SIDS and Kids to fund advocacy and Australian research into the cause for sudden and unexplained death in children.
"Sudden Unexplained Death In Childhood (SUDC) is the sudden and unexpected death of a child over the age of 12 months, which remains unexplained after a thorough case investigation is conducted."
(Krous et al. 2005)
Money raised from Brighter Days has assisted in the development of the Cooper Trewin Brighter Days Neuroimaging Study which is being conducted over the next two years at the Boston Children’s Hospital by Dr Hannah Kinney. The study aims to develop a biomarker of subtle hippocampal maldevelopment in asymptomatic toddlers at risk for sudden unexpected death with novel state-of-the-art neuroimaging techniques.
Since its inception in 2012, the Brighter Days Foundation has now raised over $950,000 through events, raffles and auctions.
Website : www.sudc.org.au