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ACHIEVER Retina Australia Victoria by MikeJenny


                V I C
                                                                     Retina Australia Victoria
                A U S T R A L I A
                                                                          Registration # A0002991W

                                          SUMMER EDITION                          JANUARY 2008

                                    ROSS HOUSE, 4TH FLOOR         247 - 251 FLINDERS LANE
                                    M E L B OU RN E VIC 3000         PHONE (03)9650 5088
                R E T I N A

                                                                          FAX (03) 9639 0979
                                                                  Web site:

       INSIDE                                               S TABILITY &
                                                           A DVANCEMENT
 From the President                   2
                                                       Victorian     Ladies     Bowling
                                                        Association raises $112,000 for
 World Congress                       3
                                                        Retina Vic!
 New Gene & Blindness                 4                Prof. Robyn Guymer speaks at the
 Lucentis now on PBS                  5
                                                       Public awareness success at both
 Blind Pilot flight                   6                 75th Great Ocean Road & Cars of
                                                        the World events
 Research News                        7
                                                       Major research developments here
 Great Ocean Road Tour                9                 and overseas

 Cars of the World                    10

 VLBA Funding                         11

 Kath Halbish honoured 11

 New Admin Manager                    11

 More Research                        12

The Achiever is Proudly Sponsored by:

          THE   ACHIEVER                          P a g e 1 RETINA AUSTRALIA (VIC) INC
                    From the President
                                                           Charles Rogers with the
                                                           VACC 75 Years’ Great
                                                           Ocean Road Celebration
                                                           Tour host John Emery
                                                           holding the ribbon
                                                           outside Lorne’s Grand
                                                           Pacific Hotel

Firstly, on behalf of the Board I would    At our October AGM we were pleased
like to extend my apologies to             to welcome Robyn Guymer who gave
members for the lack of the December       a local and global update to research
issue.                                     and treatments to an audience of 35
There has been no holiday though! All
the   Board  and     some   volunteer      A month later and it was time to
members have been working extremely        celebrate 75 Years of the Great
hard on a number of facets.                Ocean Road. This event provided a
                                           huge amount of exposure for the
In October 2005 I inherited an             awareness of retinal dystrophies
organization that had come through a
                                           across Victoria.
rough time, but needed a little extra
boost. Along with a hard-working
                                           This was followed a week later with
Board Retina Australia Victoria now
                                           the fourth Cars of the World event at
sees itself in the most financially
sustainable position since its inception   the Morning Star Estate.
in the late 1970’s.
                                           Among many goals for 2008 is to
Generation of income is possibly the       increase    the   level  of   active
most time consuming part of managing       volunteers. More people are required
a non-profit organization. Our ultimate    to spread the load of work involved
aim is to put all efforts to raise         behind the scenes.
awareness for retinal diseases – the
oyster coming from stable long-term        The vision is ours,
income sources.
                                           Charles Rogers
Retina Vic is now in a fortunate           President
position having received $112,000
from the VLBA in August. This funding      Vice-President – Jane Evans
boost is to benefit the acquisition of     Secretary – Rosemary Boyd
upgraded technology & expansion of         Treasurer – Graham Owen
support    programs     and      public    Council members: Fiona McNabb, Leighton
awareness campaigns.                       Boyd & Rick Clarke
                                           Vision 2020 Australia Representative –
                                           David Foran
                                           Administration Officer – Mary Maga
       THE   ACHIEVER              P a g e 2 RETINA AUSTRALIA (VIC) INC
                      Maija Lindroos, President, Retina Finland
The 15th Retina International World Congress will be held in Helsinki next summer. Here in Finland the
preparations are advancing and presently we are starting to get to the final stage of the work. The
scientific program for the congress is ready. The invitations have been sent to the speakers.

The exact dates for the congress will be Friday, the 4th, and Saturday, the 5t" of July, 2008. The time of
the year is the most luminous here in the north and, therefore, often said to be "nightless".

We have chosen Finlandia Hall in the centre of Helsinki as the congress venue. The building was
designed by Alvar Aalto, a world-famous Finnish architect, and has been the seat for several
international congresses and meetings of world leaders.

The official languages of the congress are Finnish and English. Thanks to the technology we have the
opportunity of arranging simultaneous interpretation in several languages. If a larger number of
participants are coming from your society to Finland and you wish to get interpretation in, for instance,
French, Italian or Japanese this will be technically possible. You can bring your own interpreter with you
or we can find you one here in Helsinki. You will pay for all the costs of the interpreter and Retina Finland
will pay for the technical arrangements.

We have succeeded in negotiating good deals with two high class hotels, the Crowne Plaza and the
Scandic Continental near Finlandia Hall. Staying in these hotels will cost about 110 Euros per night in a
double room. The price includes a very generous buffet breakfast. The walking distance to Finlandia Hall
is 5 to 10 minutes. Opposite the hotels is the big Hesperia Park where the RI Running Club can go for
their morning jog.

Besides these hotels we offer an even more affordable alternative at Domus Academica, a summer
hotel, which is situated a bit further away. The walking distance to Finlandia Hall is about 20 to 30
minutes. A single room costs 50 Euros and a double room 70 Euros per night. Rooms for three or four
persons are also available. Domus Academica functions as a dormitory for students in winter so there
is no luxury in the rooms. Each room has a toilet, shower, and a small kitchen. In the lounge there is a
TV-set and some computers. The hotel has a sauna and a small swimming pool.

The social program for the congress days has been confirmed. The Speakers' Dinner will be held in
Suomenlinna on Friday evening. Suomelinna is the historical sea fortress on the islands just off the coast
of Helsinki. The area was included in the UNESCO's World Heritage List in 1991.

On Saturday we end the congress in a festive way with a Gala Dinner celebrating also the 30-year
existence of Retina International.

According to the tradition the business meetings of Retina International will take place in connection with
the congress. We have built up the program so that we can arrange alternative programs for those in the
party who are not official delegates.

The days for the business meetings are:

Monday, June 30th, Retina International Management Committee Meeting Tuesday, July 1St, Continuous
Education Wednesday, July 2nd, General Assembly

The meeting on Monday will be held at a hotel. The business meetings on Tuesday and Wednesday ,will
take place at liris - The Service and Activity Centre for the Visually Impaired.


           THE   ACHIEVER                    P a g e 3 RETINA AUSTRALIA (VIC) INC
 From previous page
 According to the feedback from earlier congresses we have dedicated the whole Thursday for social
 activities. The participants have the opportunity of getting familiar with Finnish nature. We will make a
 trip to a national park near Helsinki where we can canoe, hike and bathe in a sauna. Alternatively
 participants can get acquainted with the colourful history of the sea fortress of Suomelinna. A partly
 separate program has been planned for the Retina International Youth participants.

 More information can be found on our website or for
 information by email: maiia.lindroos@)

 In the beginning of December the First Announcement will be published on our website. It will contain
 more detailed information both on the scientific and the social program as well as on fees
 and ways of payment.

                      New gene linked to blindness: McGill researcher
                                                by Kazi Stastna
                  Published in The Gazette, CanWest Media Works Publications Inc.
                       Copyright. Right to publish granted to Retina Australia
                                              Monday, June 04, 2007

McGill University researcher Robert Koenekoop's discovery of a new gene linked to congenital
blindness couldn't have come at a better time.

The publication on Sunday in the jo u rn a l Na t u re G e n e t i cs o f h i s and his colleagues' findings on LCA5,
one of the genes responsible for Leber Congenital Amaurosis, or LCA, the leading cause of congenital
blindness in infants and small children, comes mere weeks after the start of the first human gene
therapy trial.

That trial, under way in London, U.K., and Philadelphia, will attempt to replace another defective gene linked
to LCA, known as RPE65, but has implications for the five per cent of LCA patients whose disease is
linked to the gene Koenekopp discovered and for the rest of the 200,000 people world-wide born with
LCA, half of whom are in Canada.

"Until a few years ago ... we didn't know anything about what caused the disease and we had absolutely no
treatments or even any ideas," Koenekoop, who heads the McGill Ocular Genetics Centre, said

It took nine years to bring RPE65 from gene discovery to the human clinical trial stage, but Koenekoop is
hoping to do the same for LCA5 in only two or three years. Gene replacement trials on lab mice are to begin at
McGill this summer.

For Khadija Hilali the news that researchers had identified the specific gene that caused her 7-year-
old daughter Ikrame t o b e b o r n p a r t i a l ly b l i n d wa s exhilarating.

"I can't describe my feelings when I heard it," she said. "It's very important because when you
identify the gene responsible for the illness, it will be easier to treat it."

Ikrame was one of two children studied by Koenekoop and his international team, which included
MUHC molecular biologist Irma Lopez, Frans Cremers and Anneke den Hollander of Radboud UniversityNijmegen
in the Netherlands, and others.

             THE   ACHIEVER                     P a g e 4 RETINA AUSTRALIA (VIC) INC

What is Lucentis?

LUCENTIS® (ranibizumab) is a new drug that has been listed on the Pharmaceutical
Benefits Scheme since 1 August 2007 for the treatment of wet age related macular
degeneration. LUCENTIS® is administered by injection into the affected eye. The
procedure to administer LUCENTIS® is performed by an eye specialist as a course of
regularly scheduled injections.

What is age-related macular degeneration?

Age-related macular degeneration (AMD) is the name given to a group of degenerative
diseases of the retina that cause progressive, painless loss of central vision. AMD
affects a person's ability to see fine detail, drive, read, and recognise faces. In 2006,
approximately 129,000 people were affected by the condition. This figure is expected to
increase to 153,000 people by 2011. There are two main forms of AMD. The wet or
neovascular form of the disease, which affects around half the population with AMD,
causes scarring and loss of vision. If left undetected or untreated, rapid and severe loss
of central vision can occur within a short period of time. The dry form of the disease is a
slower form that causes gradual vision loss and cannot be treated.

What does LUCENTIS do?

 LUCENTIS® is a new therapy that can slow the progress of AMD and in some cases
restore some vision. For some patients this will be the difference between driving or not
driving, being able to read a newspaper or book and undertake other daily activities
without assistance.

Who will benefit?

It is expected that around 11,500 new patients will commence treatment with
LUCENTIS® in the first full financial year of listing, increasing to 15,000 new patients
by the fourth year. The numbers of new patients expected to be treated each year
takes into account estimates regarding progression of the disease, the numbers of
patients likely to achieve a long term benefit, expected rates of compliance and
patients who will continue on alternative treatment with VISUDYNE®.

How much will LUCENTIS® cost the patient?

A patient treated with LUCENTIS® through the PBS will meet only the standard co-
payments of $30.70 for general patients and $5.00 for concessional patients. General
patients who have reached the PBS safety net threshold will receive LUCENTIS® at
the concessional rate of $5.00, while concessional patients will receive LUCENTIS®
free of charge once the safety net threshold has been reached.

     THE   ACHIEVER                   P a g e 5 RETINA AUSTRALIA (VIC) INC

Blind pilot Miles Hilton-Barber felt euphoric when he touched down at Sydney's
Bankstown Airport, becoming the first blind man to fly halfway around the world.
In doing so he hopes to raise $1.2 million for Seeing is Believing, which performs cataract
surgery in developing countries.
"Since I was a kid, I wanted to be a pilot," the 58-year-old said when his safety pilot
Richard Meredith-Hardy landed their microlight plane, Stephanie, named after Mrs Hilton-
Barber. "When I went blind, they said you'd never fly and, thanks to people like Richard,
we've flown halfway around the world," he said, scruffing up his mate's hair. "I can hardly
believe we've done it."
Since the journey began in London on March 5, the pair have covered 21,000 kilometres,
21 countries, and endured extreme weather. "Sometimes, being blind is an advantage,"
Mr Hilton-Barber said.
The adventurers were coated in ice when they soared through sub-zero temperatures
30,000 feet over the Lebanese mountains. Between Penang and Kuala Lumpur, they
were forced to drop to a couple of hundred feet when they were caught in a monsoon.
"We've flown through tropical storms so heavy that I thought Richard was flying through a
waterfall," he said. Though he couldn't see the lightning flashes or cliffs Mr Meredith-
Hardy was dodging, he peaked his other senses to survive the flight.
Through a headset, he listened to the flight information he requested at the flick of a
button on a switchbox strapped to his thigh. The switchbox was connected to a
computer that could pick up information such as location and altitude. He navigated by
typing planned flight co-ordinates into a wireless keyboard.
"This is a very sensual aircraft," he said. "I can smell what's growing in the fields below.
As we fly into places like Karachi, I can smell what's been cooked in the factories. "It's
a very physical way to fly, very primitive."

His colleague described the experience as "flying a motorbike in the sky". "It's real
flying, you know," he said. "It's the difference between a car and a motorbike. If it
rains, you get wet."
Mr Hilton-Barber was inspired by his blind brother, who sailed solo from South Africa
to Australia eight yeas ago.
"That's what made me realise the problem in my life wasn't my blindness, it was my
attitude to my blindness. "The only thing holding me back was five inches, the distance
between my ears," he said. "Attitude is what determines altitude."
The positive attitude pushed him on to conquer Kilimanjaro, Africa's tallest mountain and
propelled him on his ascent of Mont Blanc, Europe's highest. He also set the Malaysian
Grand Prix record for a blind driver and wants to be the first blind man to break the sound
barrier in a jet aircraft.

          THE   ACHIEVER               P a g e 6 RETINA AUSTRALIA (VIC) INC
                              IMPLANT TRIPLES ARMD SIGHT
A tiny implantable telescope offers a new outlook for elderly patients with age-related macular
degeneration (ARMD). The mini-scope has been sh o wn t o b rin g a b o ut a th ree -fold
improvement in vision in patients with the central retina d ise a se , wh ich o f t e n le a d s
t o blindness.

The pea-sized device is implanted in one eye where it enlarges central vision images and
spreads t h e m o v e r a w i d e a r e a o f t h e retina. Degeneration of the macula results in the
loss of fine-detailed central vision, producing a loss of important details like text or viewing faces.
The non-implanted eye would be used for peripheral vision, which influences mobility and

The prosthesis is implanted in an outpatient procedure, and offers sufferers a permanent solution for
their vision loss, says manufacturer Visioncare, Inc.

A study in the August Archives of Ophthalmology d i s c u s s e s techniques for implanting the
scope. Authors note it improved vision by 67%. The prosthesis is awaiting FDA approval.

-- Judah Issa, Saratoga, USA

                                          (TransWorld News)

This procedure consists in an implant of amniotic membrane telomerase enhanced, rich in stem cells
of embryonic type (but not of embryonic origin) performed on both temples of the recipient in
a square area delimited by the superficial temporal segment of external carotid, its
temporal and orbital branches and the o rb it s . (T h is d e sc rip t io n is i n t e n d e d t o
familiarize the reader with the area of implant and is not to be constructed as the exact anatomy of the

After local anaesthesia of the area the surgeon performs an incision 1/3 inch long on
both temples, enters under the skin with a blunt instrument, and creates a pocket i n
which a certain amount of amniotic membrane is being introduced. The incision is then closed with
a stitch and a band aid is applied.

 It is hypothesized, that after the implant, the stem cells find an e a s y w a y t o p e n e t r a t e
t h e o p h t h a l m i c a r t e r y , w h o s e branches would become the central retinal artery and
the ciliary arteries on either side of the optic nerve, and then enter the eye and the retina. It is
assumed that the stem cells from the implant would be able to reach the retina in a matter of
minutes. However in many cases the retinal arteries are closed showing the "waxy" colour,
meaning that functionally they ceased to function.

In order to penetrate these arteries or eventually open them, a feature that is considered
impossible by the retina eye specialists, a strong blood vessel opener, Niacin the vitamin B3
vitamin in the B complex group of vitamins is being used. The use of Niacin induces almost
instantly hot flashes on the face and head, with intense reddening of the face.

These symptoms last minutes or hours, but are usually well supported by the majority of people
using it.

          THE   ACHIEVER                   P a g e 7 RETINA AUSTRALIA (VIC) INC
 It should be noticed that simultaneously with the "Templar Implant" two other implants are performed
on the lower part of the abdomen in the pubic area, where larger amounts of amniotic membranes are
inserted (description of this technique can be found in our news release of July 23rd, 2007). They
are intended to provide a steady release of stem cells that would circulate all over the body.

As such, patients with RP and related c o n d i t i o n s ( U s h e r ' s S y n d r o m e , Stargardt
disease) are receiving a total of four implants, two intended for the body as a whole, and two
destined specifically to the eye and retina.

E n c o u r a g e d b y t h e r e s u l t s obtained so far in RP, we plan to introduce the "Templar Implant:
procedure to other conditions affecting the brain, namely Multiple Sclerosis, ALS, Parkinson's,
Alzheimer's, and aging.

The Templar Implant is performed, at the present time by Dr. Omar Gonzales, Stem Cell Pharma's
Medical Director at a stem cell clinic in Mexico.

                                           DNA Update
 A new faster method of combing a patient's DNA to identify identical genome variations on the mother's and
 father's side using collections of microscopic DNA spots known as microarrays allowed the scientists to use
 samples from only one patient per family, whereas in the past locating a gene required
 doing genetic tests on many affected and unaffected family members and could take years, not
 months. Once they narrowed down an area of the genome that had 10 possibly LCA-linked
 genes they looked for similarities with another known LCA gene called CEP290, which accounts for 25
 per cent of LCA cases and was discovered by Koenekopp's team last year. That led them to the new
 gene, which is the eleventh to be linked to LCA thus far. (In each patient, LCA is caused by only one of
 these genes.)

 "What we're excited about is that these 11 genes we now know (about) take care of about 70 to 75 per
 cent of all the children i n the world with LCA," Koenekoop said. "W e're thinking this is the
 first disease that will be completely characterized genetically."

 The recent study, funded in part by the Foundation Fighting Blindness in Canada, also showed that
 both LCA5 and CEP290 play a vital role in the functioning of the cilium, the tiny hairs whose
 wave-like motion moves thousands of proteins from the nucleus of the retina's photoreceptors to an
 area called the outer segment, where light is captured and vision begins.

 When you have mutations in LCA5 or CEP290, the vital proteins that make our vision work
 cannot get from the nucleus to the outer segment," Koenekoop said.

 Gene re p la c e m e n t t h e ra p y would restore that transporting function. The eye is especially suited
 to such therapy because it is more accessible than other organs to a surgical intervention and is
 isolated. That means the healthy gene, packaged in a safe, non-infectious virus, can
 easily be injected in a tiny space under-neath the retina and will not spread to other parts of the body
 through the veins, as is the case wit h g e n e t h e rap y u sing b o n e marrow, thus avoiding
 aggravating the immune system.

 "The surgery is relatively simple, b u t t h e a c t u a l c o n s t r u c t i o n o f the gene is complex,"
 Koenekoop said.

  Replacement of the RPE65 gene in dogs suffering from LCA has also shown that the healthy gene
 need only restore the retina partially to improve vision to a functional level.

             THE   ACHIEVER                   P a g e 8 RETINA AUSTRALIA (VIC) INC
   VACC 75 Years’ Great Ocean Road Celebration Tour
An approach in mid-2006 from Geelong Otway Tourism to support their celebrations for
the opening of one of our most important man-made achievements instigated a one-off
charity event for Retina Australia Victoria.

This turned into a mammoth media event, particularly for our awareness raising. Not
only did the four-day tour support our cause, but many of the 50 people participating in
the tour shook rattle tins, which in itself raised some

Collaboration between Geelong Otway Tourism media
staff and the marketing department of our naming-
rights sponsor, the Victorian Automotive Chamber of
Commerce resulted in presence on Mike Larkan’s
Channel Ten weather report on Friday 23 November,
newspaper reports in The Weekly Times, The Age,
Geelong Advertiser and several other local papers and
numerous post event reports in magazines such as Australian Classic Car and Unique
Cars. The VACC organised a terrific coup with 3AW who spoke to President Charles
Rogers each night of the tour live on Bruce & Phil’s show.

                                                               Member and associates should
                                                               note that the tour was filmed
                                                               from start to finish by ABC TV
                                                               for their upcoming Travel OZ
                                                               series, which goes to air in
                                                               April 2008. The 75 Years’
                                                               celebration episode is due to
                                                               air on Wednesday 11 June –
                                                               check your local guides closer
                                                               to the time.

                                                               A comprehensive story and
                                                               photo gallery can be found
                                                               online at

                                             Top: The Governor of
                                             Victoria, Professor David de
                                             Kretser cuts the ribbon with
                                             Michael Crutchfield; Above:
                                             Andrew Cannon drives his
                                             30/98 Vauxhall after the
                                             ribbon cutting ceremony;
                                             Left: participants in period
                                             dress having their photo taken
                                             with the Governor in front of
                                             their cars & Right: Ian Barker
                                             winds around the road in his
                                             Alfa Romeo 1750

         THE   ACHIEVER              P a g e 9 RETINA AUSTRALIA (VIC) INC
2007 Cars of the World
Some five weeks from the event a decision was made to change venue from Point
Nepean when negotiations with the Point Nepean Community Trust broke down.
Fortunately, an alternate venue was found, and a successful event held for the fourth

Mt Eliza’s picturesque Morning Star Estate hosted the 2 December event, which
attracted some 250 vehicles of
all shapes and sizes. Many
Retina Vic member pitched in
and volunteered during the day
– some in the stall, others
rattling collection tins and
taking entrance money on the

The two events raised much
needed awareness for Retina
Australia Victoria and have
contributed a combined surplus
of in excess $10,000 for Retina
Vic to continue its services.

The 2008 event will return to
Morning Star on Sunday 23
November, and will include
other activities such as games for all the family.

Easter raffle

A special super Easter Raffle is sure to test the appetites of all
members when ticket books arrive in the post by mid-February.

If you do not receive your booklet, please contact the office.

Entertainment Books
Many of us during the recent Festive Season have gained a few
pounds. The timing is right that the 2008-2009 Entertainment Book flyers will arrive by
mid-February and will be distributed accordingly.

We invite anyone who is keen to exercise to contact the office for extra flyers. You are
welcome to distributed in letterboxes in your area – all to help raise funds to continue
our work.

         THE   ACHIEVER               P a g e 1 0 RETINA AUSTRALIA (VIC) INC
VLBA Funding update
Photocopier, database, screens, networking...
The plan for the disbursement and investment of funds received from
the Victorian Ladies Bowling Association’s generous donation to Retina
Australia Victoria of $112,000 in August 2007 has been put into place.
The initial stage has been completed with the acquisition of new technology to improve
the offices services to members. This includes purchase of upgrades to computer
software, including new versions of the MYOB Accounting system. Major components of
upgrades include the Fuji Xerox all-in-one copier/printer/fax & scanner, four line
Commander Telephone system and new database software.
During this period Board members and volunteers have worked toward linking all
computers to share all day-to-day files. This has brought to light numerous areas of
duplication, which has also been seen in the sorting and mineralising of clutter in the
three filing cabinets – now we have just two! Over the coming 12-18 months the Board
aims to further its desire to promote awareness throughout Victoria and broaden the
scope of the Exploring Vision Loss workshops.

Kath Halbish honoured
On Saturday 13 October 2007, at the Annual General Meeting of Retina Australia (Vic)
Inc., the president, Charles Rogers, announced that Council had unanimously decided to
offer Kath Halbish a life membership in recognition of her many years of support and
volunteer service. Charles spoke briefly about all of the contributions which Kath had
given during her many years as a Council member and volunteer. Kath was an
exceptional Christmas Card Co-ordinator and she assisted with the Entertainment Book
distribution and many other office duties as will as working within the peer support
program and vision loss groups. Charles thanked Kath on behalf of all members for her
wonderful work. This announcement was met with great acclamation by all present.
Fellow life member Leighton Boyd, presented Kath with her framed Life Membership
Certificate as a memento, and token of our appreciation, during the awards ceremony at
the Cars of the World event on Sunday 2 December 2007. Congratulations Kath.

New Administration Manager appointed
It is with great pleasure that we welcome Mrs Mary Maga as our new administration
manager. Mary commenced working in our Ross House office on 8 February and she has
already proven to be a real asset. Mary comes to us with a wealth of office experiences
and has a vast practical knowledge of MYOB, the financial package we use. Mary
replaces Julie-Anne Adams whose resignation was accepted by the Board in November.
The Office will now be open on Tuesday and Thursday between 9am and 3pm and at
other times by appointment. Welcome Mary.

GOLF DAY planned
An exclusive, but reasonably priced, boutique Mornington Peninsula Golf Club has very
generously volunteered to host a Charity Golf Day for Retina Australia (Vic) on Sunday
6 April 2008. Tee-off will be at 1pm following a simple barbecue lunch. We would like
all golfers and “hackers”, or anyone interested in having a “fun” social day to keep the
date free. Detailed information will be circulated to members shortly. It will be a great
event, and an opportunity to meet, and make, friends whilst raising funds for research.

        THE   ACHIEVER               P a g e 1 1 RETINA AUSTRALIA (VIC) INC
                           RETINA AUSTRALIA IN THE YEAR 2008

PROJECT TITLE: "Photoreceptor Degeneration in Retinitis Pigmentosa"

Michael Kalloniatis, Monica Acosta, Brendan O'Brien, Keely Bumsted O'Brien (University of
Auckland); Erica Fletcher (University of Melbourne, Australia); Robert Marc (University of Utah USA)


Retinitis Pigmentosa is a major retinal disease leading to functional blindness in approximately 1 in
3000 persons in developed countries. This project will use animal models of this retinal disease to
study the processes of degeneration (onset, anatomical, and neurochemical) and changes that occur
as a function of degeneration, particularly tracking ion entry into photoreceptors. Our working
hypothesis is that unregulated ion entry is the underlying mechanism leading to photoreceptor death.
We will therefore use isolated retinal preparations and electrophysiological techniques. These studies
will include drug manipulation of ion entry. A positive outcome in this series of experiments will lead
to therapeutic options aimed at slowing down the progression of retinal degeneration and thus
providing a prolonged period of useful vision to sufferers of these degenerative conditions. We will
also characterize the neuroanatomical and neurochemical characteristics of a cell class we have
recently identified in the area of photoreceptor degeneration.

AMOUNT of FUNDING:         $40,000

PROJECT TITLE: "The Role of Purines in Photoreceptor Death during Retinal Degeneration"

CHIEF INVESTIGATORS: Erica Fletcher, (University of Melbourne);
                     Michael Kalloniatis (University of Auckland)


This project will determine whether substances released from dying photoreceptors cause the death
of neighbouring photoreceptors, and whether treatments that block the actions of these released
substances can prevent the death of photoreceptors, thereby providing a novel therapeutic agent for
the treatment of eye disease. In our previous work we have shown that a compound called
adenosine-tri-phosphate (ATP) excites photoreceptors. When cells die they release large amounts of
ATP. In addition, our preliminary work shows that when ATP is found in high concentrations in the
retina, it kills photoreceptors. Therefore we propose that when photoreceptor cells die in Retinitis
Pigmentosa, they release large amounts of ATP, that excite neighbouring photoreceptors, to the point
where these neighbouring cells die. This project has three parts: the first will examine the effects that
extracellular ATP has on photoreceptors; secondly we will examine two animal models of retinal
degeneration (rd mice, and Pro23His rats) to determine whether ATP is abnormal during the peak
phase of photoreceptor death. Lastly, we will evaluate whether blocking the actions of the receptors
that ATP bind to slows photoreceptor death in these two animal models of degeneration.

AMOUNT of FUNDING: $32,203

          THE   ACHIEVER                   P a g e 1 2 RETINA AUSTRALIA (VIC) INC
"Pacemaker for the eye"
By THOMAS LEE, Star Tribune, January 24, 2008


Electricity has been used to shock hearts, ease pain and even treat depression. Now,
apparently, it can even thwart blindness. ScyFix, a Chanhassen start-up, has developed
a device that treats diseases such as glaucoma and macular degeneration by shooting
electric currents into the eye. The company, which is conducting clinical trials in India
and the United States, hopes to sell the first device approved by the Food and Drug
Administration designed to restore eyesight. "To me, this is the pacemaker for the eye,"
said Dr. Darrell DeMello, ScyFix president and a former executive at Boston Scientific

ScyFix, a featured new technology presenter at last month's annual Life Science Alley
conference, hopes to eventually raise $60 million to $70 million to finish its clinical

Neuromodulation, or electric stimulation, first gained prominence in the 1960s through
the use of deep-brain and spinal-cord stimulation to treat pain. Doctors at the time had
begun to realize pain was not just the result of the direct activation of pain receptors but
rather a complex series of electric and chemical interactions throughout the nervous
system. Therefore, electricity could be used to manipulate those interactions. Medtronic
Inc. laid the groundwork for the medical device boom in Minnesota by developing the
implantable pacemaker, a device that uses electric impulses to regulate heartbeats.
Today, companies like St. Jude Medical and Uroplasty are developing implantable
devices to fight chronic pain and incontinence. Doctors are also harnessing electricity to
treat Parkinson's disease, deep depression, and obsessive compulsive disorder.

But until now, the idea to use electricity to slow or even reverse the effects of eye
diseases like glaucoma has never made it out of a laboratory, said Dr. Thomas
Samuelson, a founding partner of Minnesota Eye Consultants. Samuelson, an
ophthalmologist, recently developed a new surgical procedure to treat glaucoma in a
minimally invasive way.

Neuromodulation for the eyes is "nowhere near the clinical level," said Samuelson, who
is not connected to ScyFix. "As a glaucoma specialist, it has never come up as a
treatment for glaucoma."

Glaucoma, wet and dry eye macular degeneration, and retinitis pigmentosa, which
severely reduce vision or cause blindness, have become more prevalent in the United
States, especially as the country's baby boom population ages. People suffering from
such age-related diseases will jump from nearly 30 million today to 43 million by 2020,
according to the American Academy of Ophthalmologists.

Medical outsider leads firm

Thomas Harold first came up with the idea for ScyFix in 2002. An Internet entrepreneur
and a former executive at General Mills, Harold became interested in studies that
showed electricity could restore sight. Drugs, however, could only slow the effects of

         THE   ACHIEVER                 P a g e 1 3 RETINA AUSTRALIA (VIC) INC
some diseases.

"I thought to myself: 'No cure? No therapies? That's interesting,’ said Harold, who is
now chief executive of ScyFix.

Specifically, the studies showed electricity could stimulate the production of
neurotrophins, a family of proteins that can instruct optic nerve, retinal neurons and
photoreceptor cells not to die. In addition, neuromodulation can also repair cell
membranes, allowing cells to absorb nutrients, release wastes, improve blood flow to
the eye and rewire faulty nerve connections.

Working with doctors and engineers, Harold, who has no medical background,
developed a device that releases low-intensity electric currents into the eyelids through
electrodes. A complex mathematical equation programmed into the device controls the
amount and frequency of the electricity. Patients can administer the treatment at home
twice a day for 20 minutes.

Harold says he is highly encouraged by the results so far: Since 2002, the device has
halted progression of diseases in 95 percent of the 1,000 patients tested in 29 countries,
according to ScyFix.

"Everything stopped getting worse," Harold said. "That was a win in itself."

In addition, 80 percent of the patients reported vision improvement. There were no side
effects, the company said.

Harold and DeMello envision developing an implantable eye device and possibly using
electricity to correct common eye problems such as nearsightedness. But even Harold
admits there are many unknowns regarding eye diseases and the effects of electric

Still, Samuelson of Minnesota Eye Consultants thinks the treatments are worth

"If you can stimulate [the nerves] somehow, it might help," he said. "It seems like a
reasonable thing to evaluate."

Everything stopped getting worse," Harold said. "That was a win in itself."

In addition, 80 percent of the patients reported vision improvement. There were no side
effects, the company said.

Harold and DeMello envision developing an implantable eye device and possibly using
electricity to correct common eye problems such as nearsightedness. But even Harold
admits there are many unknowns regarding eye diseases and the effects of electric

Still, Samuelson of Minnesota Eye Consultants thinks the treatments are worth

"If you can stimulate [the nerves] somehow, it might help," he said. "It seems like a
reasonable thing to evaluate."

         THE   ACHIEVER              P a g e 1 4 RETINA AUSTRALIA (VIC) INC
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             P a g e 1 5 RETINA AUSTRALIA (VIC) INC
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