New FARA Logo (US)

Hi everyone

here is some news from FARA (US)

Introducing the new FARA logo

Dear FARA community, the FARA Staff and Board is pleased to announce the
introduction of an updated FARA logo. This mark replaces the previous
logo for all FARA printed and web materials. It is our hope that you
find this new mark to be distinctive, inclusive and identifiable.

Why a new logo?

Over the past year, FARA received feedback that our logo needed to be
updated. We were fortunate to have access to the advice of advertising,
marketing, graphic design and fundraising professionals. After getting
to know FARA , they all recommended an update to the logo, in order to
more accurately convey the culture and mission of our organization. This
became even more necessary as FARA is working with a growing number of
academic, pharmaceutical, government and advocacy organizations, and
expanding our corporate partnerships. Also, many of our fundraising
efforts have their own logo or symbol and we wanted a mark that
supported this but also clearly identified our organization.

The Process

Members of the FARA Board and Communications committee formed a team to
assess the current logo's attributes and to develop the goals for the
new logo which follow:

Present an image of a sophisticated, capable, international
research organization
* Create a clean and professional image that is easy to recognize
and reproduce
* Make the full logo readable at all sizes
* Retain some elements of the original FARA identity
* The logo should be easily compatible with other event logos
*
One aspect that you may notice is that there is no additional graphic
symbol or mark such as the children in our previous logo. While we all
miss the children and the powerful story they represent, the decision
was made to go with a simpler logo so that the FARA logo would be easily
compatible with the dozens of event logos used around the country.

The Roll-Out

As you will note, the FARA logo is already starting to appear. FARA will
gradually be changing out all communications materials. Out of respect
for our environment and hard-earned funds, we will not be throwing away
any printed materials!

All fundraisers, event coordinators and partners will receive a resource
kit for use of the logo. It will contain the new logos in electronic
formats for use in printing professionally and at home in color and
black and white.

If you have any questions, please do not hesitate to contact us. This
project was intended to enhance all of our communications efforts.

Thanks in advance for your assistance!

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

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

FARA review meeting

Hi everyone.

A couple of weeks ago, I attended the FARA(A) Scientific Review Meeting
in Melbourne. This is their 5th National Meeting, and the room was
packed. There were over 40 scientists and researchers there all ready
to share and discuss their work on FA.

As alot of the work is still ongoing and yet to be published, I will,
out of respect for these wonderful people, keep my comments general.

The start of the day was all about stem cell research, with particular
interest in IPS ( induced pluripotent stem cells). I recently saw a 7
minute grab from a Aussie TV show ( Catalyst) which was presented by the
same team, and gives a pretty good description on where they are. See
following link
http://www.abc.net.au/catalyst/stories/2608076.htm

This was followed by discussion on developing FRDA IPS, and extracting
the GAA expansion to enable them to be returned to the host..... VERY
exciting work here.

Later we had a very enlightening talk about the cardio side of FA. one
of the things that stood out in my mind, was the concept of perhaps we
should stop calling FA heart conditions, HCM. There are many variables
that just don't fit it into that diagnostic box. The measurements, as
well as the function is unique to FA, and tends towards a correlation to
the GAA1 and GAA2. It certainly got me thinking about who we should be
seeing for cardio.

Another enlightening talk was on Audiology. The issue with FA is not the
hearing, but the processing. In all subjects tested. 100% of those
with FA had some level of processing trouble. A good example is, when
you are in a crowded room and hearing becomes a strain because of the
background noise. This becomes important in school/study situations. One
avenue to help this is FM listening devices. Certainly FA'ers should
try and organise Central Auditory Processing Testing, to determine where
they are, and possibly adjust accordingly.

This then lead into speech function.... after a long discussion it is
possible that tounge " gym workouts" can help in this area. This was
more from the parents observations. However what came out of this, was
the importance of the input from the parents/carers, and their years of
daily study and experience, and how invaluable it all is.

Mouse models.

this although sounding mundane had an important breakthrough. In the
past mouse models have been varying and carefully guarded around the
world. None have been perfect and as a result, testing and results are
dependant on the mouse model used. It has been announced that now a
universally accepted mouse model has been accepted and is now being held
and available from JAX. ( Jackson). This is great as it means everyone
is using the same " playing field".

There are a few things that came home with me and left an impression.

1/ the importance of a good cardiologist who understands the
relationship of FA and the heart.
2/ the importance of a good auditory assessment
3/ the importance of constant on going gym and physio work
4/ the excitement over the HDAC inhibitors. ( personal note: is this the
"holy grail?")

Sorry this has been so long in coming out.... Seasonal issues, as well
as just mentally processing and weeding out the important stuff.

The good news is, there was passion in the room, and the WANT to find a
cure/treatment.... all these scientists and their departments vying
towards a common goal. Although a serious subject, the mood was light
and friendly and happy.

hope is that 2010 will get us even closer to what we all long for

cheers

--
Laurel Hosking
Help FA in SA
mob: 04204 98963
ph: 08 72212045
fax: 08 85221313
laurel@linvid.com

Enzyme blocker may reverse nerve damage

Hi there, I saw this on ABC Online and thought you might be interested:

Enzyme blocker may reverse nerve damage
http://www.abc.net.au/science/articles/2009/10/27/2724996.htm?

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latest FARA treatment pipeline

Hi everyone

here is the latest FARA ( US) treatment pipeline... you will see there
is alot happening, and the funding is spread all over the world.....

let me stress, this is what FARA (USA) is funding... not what FARA (A)
is funding here in Australia...... however it gives you a world idea of
what is going on, and you will notice that the team from the Murdoch
research centre is included.

cheers everyone

Laurel Hosking
Help FA in SA
mob: 04204 98963
ph: 08 72212045
fax: 08 85221313
laurel@linvid.com

hope abounds

this is very very exciting.

laurel
http://www.scripps.edu/newsandviews/e_20090928/gottesfeld.html