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The Friends of Sammy-Joe
Foundation
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Fundraising Shop at Cafepress.
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© The Friends of Sammy-Joe Foundation 13 Hursley Court, Craigieburn Victoria 3064 Australia contact@friendsofsammyjoe.org
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for your support.
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button below to visit our
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for your support.
Email:
contact@friendsofsammyjoe.org
Mail:
The Friends of Sammy-Joe
Foundation, 13 Hursley Court,
Craigieburn, Victoria 3064 Australia
Phone: Fax:
0407 558 151 03 9305 7591
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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 $70 each.
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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.
Sammy-Joe with mum Maria
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.
PLEASE HELP!!
A ‘Friends Of Sammy-Joe’ donation charity tin
was recently stolen from a pharmacy in Craigieburn.
Please help us to find the thief.
Click here to visit 9 News to read more
Click here to read more also
Click here to read Hume Leader’s article on the
community stepping up to help
Click here to read a post by Maria Vamvakinou MP
about Sammy-Joe & Trichothiodystrophy (TTD)
Now Available:
Turi Trust Charity Documentary - click here to watch (YouTube)
