ACTS Alderley serves as auspices for Hughie.org.au, a family based project which is raising awareness and funding for Alpers Syndrome research. The remarkable story of Hugh a little boy who suffered this condition and now in heaven, has inspired his parents, family and others to support other families who battle with this condition.
The family have set up Hughie.org.au to:
- Raise awareness of Alpers Syndrome
- Support families who have a child with the syndrome by providing a virtual space (website) where families can connect
- Establish a way of helping people with the best information and medical support options
- Support medical research and treatments
A substantial gift has been presented to Department of Neurogenetics at the Knolling Institute of Medical Research in Sydney for Alpers Syndrome research with more to come. This has been a start in moving toward medical solutions for this little researched and desperate condition. Momentum continues as donations are received and the Tour for Alpers, cycle fund raiser lifts the profile of this worthy cause. We welcome your tax deductible gift today.
For further information visit Hughie’s website: http://hughie.org.au/
ACTS Alderley also operate a number of other projects including Good Neighbour Network – addressing loneliness and isolation, Coffee & Chat group for mental well-being and Hostels, residential and business chaplaincy.