Patient Family Forum

FARA(A) announced it will be holding its inaugural patient family forum,
to be held on Sunday November 27th in Melbourne.

FA in SA is proud to be a part of this event, and we look forward to
seeing many patients and families at this wonderful event.

Further details to follow shortly

SA scientist to speak at FARA(A) Review meeting

Dr Tara Pukala of the University of Adelaide, recently spoke of her work
in Genetic Protein Structure and the consequences for Human Disease.
FARA(A) has now invited her to share her research concepts at the
Scientific Review meeting to be held at end of November.

FA in SA is very excited by this, and looks forward to hearing more of
her exciting work

http://blogs.adelaide.edu.au/researchtuesdays/2011/09/14/infiltrating-the-cell/

http://www.adelaide.edu.au/directory/tara.pukala

Sunshine not so FREE

Please Share

When I was married, I was astounded at the massive profit margin on
anything to do with weddings!

When I was pregnant, I was astounded at the massive profit margins on
anything to do with babies!

When I became the mother of a disabled child, all the rest paled into
insignificance.

Society is often encouraged to get fit and stay active, and the
promotion of "free" activities like getting outside and walking or
running are favourites.... well there is nothing free about getting
outside for the disabled.

Basic equipment to enable the disabled are astronomical.... believe me,
getting into that sunshine, has never been so expensive.

Recently I was pricing a new accessory for a wheel chair, nothing much,
just a couple of handles attached to the axle. $5000. and that's
BEFORE the cost of the wheelchair.

A simple small crane to lift a mobility scooter into and out of the
car .... $6000

These are just a couple examples, but you get the idea.....Is this
covered by health insurance????

NO!

Does the government cover this?

NO!

Do Charities cover this?

TO A POINT!... but there are LONG cues... meanwhile we stay inside

So next time you are out walking and enjoying the sun, be thankful....
somewhere nearby where you are walking, there is probably a disabled
family, struggling to enjoy this basic free right!

Research news

Here are some reasearch items of interest

Mesenchymal Stem Cells Restore Frataxin Expression and Increase Hydrogen
Peroxide Scavenging Enzymes in Friedreich Ataxia Fibroblasts
http://www.plosone.org/article/info%3Adoi%2F10.1371%
2Fjournal.pone.0026098

DELIVERY OF MRNA FOR THE AUGMENTATION OF PROTEINS AND ENZYMES IN HUMAN
GENETIC DISEASES
http://www.freepatentsonline.com/y2011/0244026.html

Absence of an Orphan Mitochondrial Protein, C19orf12, Causes a Distinct
Clinical Subtype of Neurodegeneration with Brain Iron Accumulation
http://www.sciencedirect.com/science/article/pii/S0002929711003971