Click here to donate to The Friends of Sammy-Joe Foundation   Click here to visit Sammy-Joe’s Fundraising Shop at Cafepress. Sammy-Joe’s mother Maria writes about her experiences in her online journal. Click here to read the journal.
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© The Friends of Sammy-Joe Foundation 2013       P.O. Box 400, Bonwick Street, Fawkner   Victoria   3060   Australia
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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.
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Please Help Our Charity

By Ordering From Imagemats Ray Taarnby would like to offer 25% of the sale price as a donation to The Friends of Sammy-Joe Foundation from all people who order matting from them. Ray Taarnby 75 Manton Street Hindmarsh   South Australia   5007 Phone +61 (8) 7002 5277 Fax +61 (8) 7225 1914 Mobile +61 (0) 419 400 071 Or Renting A Vehicle From The Rent Van Company The Rent Van Company are offering donations to The Friends Of Sammy-Joe Foundation for every vehicle hired from them. Click here for further information. Thank you so much for your support.
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Email: Mail: The Friends of Sammy-Joe Foundation, P.O. Box 400, Bonwick Street, Fawkner, Victoria 3060 Australia Phone:                  Fax: 0407 558 151         03 9305 7591 Visit Us On:
THE FRIENDS OF SAMMY-JOE FOUNDATION PRESENTS DANCE EXTRAVAGANZA  31st MAY 2014 7pm - 11.30pm Broadmeadows Leisure Centre Corner Pearcedale Parade & Dimboola Avenue, Broadmeadows Put on your dancing shoes for a fantastic night of: OLD TIME DANCING, BALLROOM, ROCK ‘n’ ROLL & DISCO. $15 per person B.Y.O. Snacks & Drinks Tickets on sale now at the Broadmeadows Leisure Centre. For further information, please call: 9205 2670 Click here for flyer
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.