New Web Page

Help FA in SA ( Help Friedreich Ataxia in South Australia) is delighted
to announce the launch of Help FA in SA webpage.
http://www.fainsa.org

The site is aimed at those interested in Friedreich Ataxia, or looking
for further resources, for information regarding current scientific
research, or those looking for an interesting event which helps to find
a cure for this crippling disease.

Help FA in SA was started by Laurel and Wes Hosking, whose 9 year old
son was diagnosed with Friedreich Ataxia in 2007. Laurel and Wes
stuggled for years to get answers to their sons poor co-ordination and
clumsiness, only to be told " he is just one of those kids". It was
only through their persistence and stubbornness that they finally got
the answer.

Help FA in SA primary focus is to raise awareness of FA in South
Australia, and to raise funds for FARA(A)- Friedreich Ataxia Research
Association (Australasia). FARA(A) is a Registered Charity, which can
boast 100% of funds raised actually goes into research to find a cure.

FARA(A) can also boast the instigation for the first clinic world wide,
solely dedicated to FA. The clinic is so successful, they are now
looking to expand and open another.

Since forming Help FA in SA, Laurel and Wes, through the generous help
and support of friends, have raised over $35000. Every penny going to
exciting and promising research.

Why is science working around the world to find a cure? Because they
believe they can a " win " this one.!

For further information, please contact

Laurel Hosking
laurel@fainsa.org

A toast!.. here is to finding the cure in 2010!

--
Laurel Hosking
Help FA in SA
mob: 04204 98963
ph: 08 64301857
fax: 08 85221313
laurel@fainsa.org

Sad news from FARA

The following is a message from FARA

Dear Friends,

We, at the Friedreich's Ataxia Research Alliance (FARA), are deeply
saddened to inform you of the passing of Keith Andrus on January 22,
2010. Keith was the beloved son of FARA President Ron Bartek and his
wife Raychel. Keith's diagnosis of Friedreich's ataxia inspired Raychel
and Ron to pick up that torch, joining him in his fight, and found FARA.
Even during the final and very challenging months of Keith's life he
courageously continued to not only advocate for himself but for others
with FA as he left no stone unturned exploring advanced and experimental
treatment options. Keith also made the decision to make the ultimate
contribution to research at the end of his life with the donation of his
tissues so that research will continue. Because of Keith many thousands
have hope for a treatment for FA. Thank you, Keith.

We often quote Ron as saying, "Acting alone there is little any of us
can accomplish whereas acting together there is little we will not
accomplish." These words are deeply rooted in the FARA culture- the way
we pursue treatments and a cure for FA, and today they also serve as a
source of comfort in this time of great sadness. While our hearts break
for the Andrus/ Bartek Family, we feel the collective strength of our
greater FA family. You stand beside us in our work every day. You hold
us up. You push us forward. In this time of grief, you are present and
our commitment to and sense of urgency for the FARA mission does not
waiver.

If you wish to extend personal condolences to the Barteks, you can do so
by mail at: 4505 Wakefield Drive, Annandale, VA 22003 A memorial service
will be held on Saturday January 30, 2010 at 11am at St. Matthew's
Methodist Church, 8617 Little River Turnpike; Annandale, VA 22003-3604.
At Keith's request, FARA has established a memorial fund, designated to
cardiac research in FA, for contributions made in Keith's memory.

We are grateful to Ron, Raychel and Keith for making their journey with
FA into a greater alliance of families and for the FA research progress
born out of that alliance.

Sincerely,

The FARA Board of Directors & Staff

About FARA
The Friedreich's Ataxia Research Alliance's (FARA) mission is to marshal
and focus the resources and relationships needed to cure FA by raising
funds for research, promoting public awareness, and aligning scientists,
patients, clinicians, government agencies, pharmaceutical companies and
other organizations dedicated to curing FA and related diseases.
www.CureFA.org

Contact
Jennifer Farmer
Executive Director, Friedreich's Ataxia Research Alliance
(484) 875 3015
info@curefa.org