Click here to donate to The Friends of Sammy-Joe Foundation   Click here to visit Sammy-Joe’s Fundraising Shop at Cafepress.
Make A Donation
Fundraising Shop
© The Friends of Sammy-Joe Foundation                      13 Hursley Court, Craigieburn   Victoria   3064   Australia
Contact Us
What is Trichothiodystrophy? Trichothiodystrophy (TTD) is a rare genetic disorder that involves the production of abnormal brittle hair, icthyosis, and physical and developmental disorders. It can also involve ataxia, stunted growth, and skin sensitivity to light and UV rays. TTD is a seriously disabling disorder with a severe skin affliction and serious developmental defects and growth retardation. It can also cause immune deficit cells, premature aging in facial features, cataracts and dental abnormalities, poor weight gain, autistic characteristics such as irritation to high frequency sounds, and repetitive movements and behaviours. It is one of a group of diseases - the others being xeroderma pigmenentusm and cockayne syndrome. It is a rare and recessive disorder, and patients can be characterised by symptoms of sulphur deficient hair, and in about 80% of cases, photosensitivity. There have been no reports of association with skin cancers, but patients have been known to have short life expectancy. Diagnosis is made by studying the hair mounts, and by amino acid analysis which demonstrates decreased high sulphur matrix proteins. The hair is so brittle that once it emerges from the skin and becomes exposed to the environment, the hair breaks and fractures, and so the result is brittle, short and sparse hair. This is why most of the children with TTD have sparse eyebrows and eyelashes. There is currently no treatment for TTD.
Web Site by VP-IT

Why You Should Be Enjoying the Summer Sun

Please Help Our Charity By Making A Donation Via                                             EVERYDAY HERO
Thank you so much for your support.
Please click the logo or button below to visit our GoFundraise page
Thank you so much for your support.
Email: Mail: The Friends of Sammy-Joe Foundation, 13 Hursley Court, Craigieburn, Victoria 3064 Australia Phone:                  Fax: 0407 558 151         03 9305 7591 Visit Us On:
Entertainment Memberships include over $20,000 worth of valuable 2-for-1 &  up to 50% off offers from many of the best restaurants, arts, attractions, hotel accommodation, travel & much more! Books can be purchased directly from Maria or ordered online. Alternatively, there is an app available. The books are $65 each.
A page has been set up on GoFundMe to help Sammy-Joe with his medical needs - the costs are so high and the family is struggling. Please help by donating. We need to provide funds for over the counter medications and expensive prescription drugs that are not covered by the PBS. Please click here to donate.
Thank you so much for your support.
This is a freelance article by Helen Angus. Watching the sun rise and set, sitting out on a warm summer’s day, or even waiting to watch the moon pass across its face during an eclipse: the sun is a large part of most people’s lives. However, enjoying the sunshine isn’t an experience that we can all share. The sun and the UV rays that it produces are so powerful that they can harm us, particularly those of us with conditions like TTD, whose bodies aren’t able to protect themselves. The Dark Side of the Sun Sunburn is a clear reminder of just how powerful sunlight can be, but even when we manage to avoid burning, we can still be harmed by exposure to the sun. You might not be able to see it happening, or to feel the effects immediately, as someone with TTD would do, but the sun could be damaging your skin cells and the DNA they contain. One of the effects of this invisible damage does become apparent over time, as some of the effects of ageing are caused by the damage inflicted by the sun. When we develop wrinkles and sunspots, we can blame many years of exposure to the sun, as well as our age. Sometimes, the effects can be more serious. The sunlight that penetrates our skin can damage our DNA. Click here to read full article...
Sammy-Joe with mum Maria Read about a Market Show for Sammy-Joe on October 25, 2015 at Craigieburn Leisure Centre, Craigieburn here (Article & accompanying photos courtesy Hume Leader Newspaper, Kylie Else photographer) Click here for Event Flyer