THE
ACHIEVER
Retina Australia Victoria
Registration # A0002991W
AUTUMN EDITION
MARCH 2015
R O S S H O U S E , 4 TH F L O O R
M E L B OU RN E
VIC 3000
INSIDE
FROM THE PRESIDENT
2
FEATURE:
BILLIONAIRE PLANS CURE FOR
BLINDNESS AS HE APPROACHES 90 6
RESEARCH UPDATE:
ORPHAN DRUG DESIGNATION FOR
RST-001 FOR RP
8
HELPING BLIND DOGS SEE COULD
HELP FIGHT HUMAN BLINDNESS 10
SCIENTISTS FIND STEM CELL
RESERVOIR IN HUMAN EYE
12
DEVELOPING AN INSTRUMENTAL
ACTIVITIES OF DAILY LIVING TOOL 13
STUDY ON EFFECTS OF LUTEIN AND
ZEAXANTHIN ON VARIOUS THINGS 14
DEPRESSIVE & ANXIETY DISORDERS
IN VISION IMPAIRED ADULTS
15
DUAL SENSORY LOSS GROUP
15
BE MY EYES MOBILE PHONE APP 16
CHOROIDEREMIA FACEBOOK SITE 17
LEARN TEN PIN BOWLING
17
AIRLINE POLICY FOR DISABLED
18
INDIVIDUAL GRANTS PROGRAM 18
QUESTION TIME & LAST WORD
19
247 - 251 FLINDERS LANE
PHONE (03)9650 5088
FAX (03) 9639 0979
Email: support@retinavic.org.au
Web site: www.retinavic.org.au
AUTUMN NEWS
 Bumper issue full of local and
international news
 Advance notice of National
Congress in Melbourne
 Retina Australia research grants
details
 Interesting mix of research
articles
PP: 33 1088/00015
From the President - Leighton Boyd
Welcome to the Autumn edition of The Achiever for 2015. This year promises to be a
very busy one for Board members of Retina Australia Vic as we work together with
some assistance from other volunteers to plan and administer the 2015 Retina
Australia National Congress. Information will be distributed as it becomes available but
I would like to take this opportunity to invite all members to attend and for you to invite
family members or friends to come along as well. It is a wonderful opportunity to learn
first-hand about research being conducted world-wide, as well as to meet and mingle
with the researchers and to have discussions with other members who are also
affected by retinal disease.
RETINA AUSTRALIA NATIONAL CONGRESS 2015
As mentioned in the previous Achiever, this event will be
held at the ibis Hotel Melbourne, 15-21 Therry Street, from
the 23rd to the 25th of October 2015.
As can be seen from the flyer attached to this newsletter, the theme of the Congress is
“Global Eyes 2015” with the subtitle of “Bionics, Gene Therapy, Stem Cells and More”.
Our Keynote Speaker is Dr Gerald J. Chader, who is the Executive Director of the
California Project to Cure Blindness from the University of Southern California, Los
Angeles USA. Dr Chader is also the secretary of the Scientific & Medical Advisory
Board of Retina International. I have had the pleasure of listening to Dr Chader on a
number of occasions at Retina International Congresses and have always found him to
be a most informative and knowledgeable speaker who has the knack of making
complex scientific research easy to understand.
We are also planning a number of presentations from leading Australian research
scientists, many of whom have received grants from Retina Australia during the
previous three years. It will be most interesting to hear about the results of their
research, or about the progress they have made if their research is on-going. As soon
as the program is finalised we will circulate it for your information and consideration. It
is anticipated that registration forms will be available from April onwards and these will
be distributed to anyone who expresses interest in attending the Congress. All events
associated with the Congress will be held at the hotel. Participants interested in
staying on-site for the duration of the Congress are required to make their own
accommodation reservation separately to the Congress registration and this can be
done now. Please note that because of the Spring Racing Carnival and other events,
there is limited accommodation so you will need to make your booking early.
For more details about the Congress, or to register your interest in obtaining additional
information, please contact the office by phone on 03 9650 5088, or email your
questions to support@retinavic.org.au and we will get back to you as soon as
practicable.
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AUSTRALIAN INHERITED RETINAL DISEASES REGISTER AND DNA BANK
Retina Australia has agreed to continue their support of the Australian Inherited Retinal
Diseases Register and DNA Bank (AIRDR) by pledging an amount of $128,700
towards the research being undertaken in 2015. This means that by the end of 2015,
the total amount contributed by Retina Australia since 2009 will be almost $1.1 million
dollars of which Retina Vic has provided almost $260,000.
As a result of the generosity of donations from members and friends of Retina
organisations across Australia, the work of the AIRDR has been advanced:
 DNA from around 4800 Australians who have, or have a family member with, an
inherited retinal disease has been collected,
 more than one third of the DNA collected to date has been analysed and the
probable disease-causing variant has been identified in 55% of these analyses,
 disease-causing variants have been found in 62 different genes in the Australian
population, and
 in excess of 230 participants have been provided with detailed genetic analysis
reports regarding their own condition.
There is more vital work to be done. The AIRDR team have made important progress
with regard to identifying potential candidates for current or anticipated world-wide
clinical trials for Leber Congenital Amaurosis, Choroideremia, Stargardt disease and
for some rare gene-specific trials, but are still investigating more common forms of
inherited retinal disease. They are also working on the future possibility of attracting
gene-specific clinical trials to Australia in conjunction with the Lions Eye Institute in
Perth.
The Board of Retina Australia Vic, along with all other state Retina organisations,
believe that it is essential that we continue our support as this will keep alive the most
viable current pathway to a cure or treatment for family, friends or fellow Australians
with an inherited retinal disease. I would ask that you continue your generous
donations so that this work can continue and one day will lead to the provision of a
treatment or cure for inherited retinal disease.
RETINA AUSTRALIA RESEARCH GRANTS
I am extremely pleased to be able to inform you that Retina Australia will also fund
three individual research projects in 2015. These project grants are also made
possible by the generous donations made by Retina Australia members and friends in
all states of Australia. A summary of these projects follows and I would like to wish the
researchers and the teams involved all the best for their research projects.
(i) “Correcting inherited retinal disease through gene editing”
Chief Investigators:
Dr Sandy Hung with Dr Raymond Wong; Dr Kathryn Davidson;
Dr Alex Hewitt; and Dr Alice Pebay of the Centre for Eye Research Australia
Amount funded: $39,551
Description: Breakthroughs in cellular technology have led to the ability to generate
stem cells from adult tissue. This offers the unique ability to interrogate pathological
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processes in tissue, which cannot be easily obtained pre-mortem (e.g. retina). In this
study we will use recently developed molecular techniques for genome editing to
correct and assess three specific mutations, which cause three distinct blinding retinal
diseases (Best Disease, Doyne Honeycomb Retinal Dystrophy and Sorby Fundus
Dystropy). Combining these technologies for ocular disease is novel and will lead to
the next generation of gene therapy.
(ii) “Hyperspectral funduscopy for non-invasive detection of retinal ischemia”
Chief Investigator: Dr Marc Sarossy with Behzad Aliahmad and Prof Dinesh Kumar
of RMIT University
Amount Funded: $40,000
Description: Retinal ischemia is the cause of a large number of blindness cases.
Successful completion of this project will lead to a novel way to diagnose retinal
ischemia and the extent of retinal blood flow without fluorescent dye injections, which
is invasive and requires extensive infrastructure, and has the risk of allergic reactions.
To test this hypothesis, a hyperspectral camera, a camera with many more colour
channels than commonly used RGB cameras, will be integrated with fundus imaging
equipment, and retinal images will be taken of volunteers (both healthy and diseased)
prior to their fluorescence angiogram. Spectral analysis of the images will be
performed to automatically detect abnormalities (features) corresponding to retinal
ischemia. Such a method will provide non-invasive detection of ocular ischemia without
the extensive infrastructure that is required for fluorescein angiography, which is
currently used for this purpose.
(iii) “Evaluation of electrical stimulation strategies for selective activation of
neurons by a retinal prosthesis”
Chief Investigators:
Professor Nigel Lovell with Dr Amr Al Abed of the University of
New South Wales
Amount funded: $39,405
Description: A retinal prosthesis, or the bionic eye, is a promising treatment for the
restoration of vision in patients with retinitis pigmentosa and age-related macular
degeneration. The device utilises an array of fine electrodes implanted in patient’s
eyes to deliver electrical pulses to activate the surviving cells in the retina, in particular
the retinal ganglion cells which transmit impulses encoding visual information to the
brain. In the mammalian retina distinct neural pathways are specialised to detect and
transmit certain features of the visual image to the brain. In order for the artificial
electrical stimulation delivered by the bionic eye to reproduce physiological vision, the
stimulation strategies of these devices have to be programmed to mimic the natural
retina in their ability to selectively target neurons. This can be achieved by
arrangement of stimulating electrodes or configuring the pattern of electrical pulses
delivered by each electrode, areas which our group have been actively researching
and developing over the last 15 years. This proposal aims to use a combination of
experimental, imaging and computational modelling to elucidate the mechanisms of
selective neuronal recruitment of distinct retinal pathways by high frequency
stimulation and thence optimise the stimulation strategies delivered by retinal
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prosthesis. Retinal tissue preparations will be stained for ganglion cells and high
resolution 3D geometrical representations of these cells will be reconstructed. The
responses of retinal ganglion cells to light stimuli will be imaged en mass by advanced
microscopy and populations of these cells would be functionally classified. The
neuronal cells shapes and functional responses will be captured into a computational
model of the retina that would simulate the effects of electrode size and configuration
in a multi-electrode array of a retinal prosthesis, on retinal cell population responses
and advance our understanding of the mechanisms underlying selective neural
recruitment. Our objective is to introduce and test a new approach to retinal
neurostimulation that will allow targeted neural recruitment. While contributing directly
to our knowledge of neural activation in general and retinal neurophysiology
specifically, the work will also be a critical enabler of improved vision processing and
stimulation strategies in future generations of the bionic eye.
FACEBOOK and TWITTER
Thanks to some hard work by one of our Board members Mary-Anne Carmody, Retina
Australia Vic now has its own Facebook page which is “Retina Australia – Vic Inc” and
a Twitter account which has the Twitter name of “Retina Australia Vic @RetinaVic”.
For those of you who have an interest in social media we would ask that you “like us”
on Facebook and that you “follow us” on Twitter. The main purpose in setting up these
accounts is that we can advertise the Congress and keep people informed of the
program as it evolves in order to encourage as many people as possible to attend. We
would really appreciate your support in spreading the word through your own
Facebook and Twitter networks. You may remember that in 2011, a small group of
people from across Australia, who are all aged between 18 & 35 years and who are
affected by an inherited retinal disease, combined to commence a Retina Australia
Youth Group. Their main aim was to discuss and raise awareness about youth issues
relating to their eye conditions and to build a support network. Consequently, they
established a “closed group” on Facebook called “Retina Australia – Youths” where
only members see the posts. If you are in this age group, or know someone who is, I
encourage you to join the group on Facebook and share your stories.
CONGRATULATIONS
I would like to offer Retina Australia Vic’s congratulations to Dr Alice Pébay of the
Centre for Eye Research Australia on her recent appointment as Associate Professor
with the University of Melbourne. Alice has an extensive research career in stem cell
research in Australia. After graduating from the University of Paris with a PhD in
Neurosciences in 2001, she re-located to Melbourne and since then has worked with
Australia’s leading stem cell scientists. In 2012, Alice was appointed to head CERA’s
stem cell research program. Members who attended the 2014 AGM were provided
with a very interesting account of Alice’s research and were able to ask questions and
discuss additional aspects of her work in a relaxed atmosphere during afternoon tea.
Congratulations Alice, a well-deserved appointment.
Footnote: Assoc/Prof Pébay will be one of the main presenters at the Retina Australia
National Congress 2015 and I certainly am looking forward to hearing her speak about
the progress of her research and about developments in stem cell research globally.
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Billionaire Plans Cure for Blindness
as he Approaches 90
Alfred Mann spent $1 billion of his own
money and 13 years of his life to get a
breakthrough
diabetes
treatment
approved by regulators. Now the 89year-old Las Vegas billionaire wants to
cure blindness.
Second Sight’s eye
implant is currently limited to patients
who still have a functioning optic nerve.
The next stage is to connect the implant
directly to the surface of the brain, a
treatment that would target all forms of
blindness.
Curing blindness may be a hurdle for Mann at least as difficult as bringing to market
the inhalable insulin developed by MannKind Corp - the company he named after
himself. The technical challenge to develop a drug like that flummoxed Pfizer Inc., then
the world’s biggest drug maker, and proceeded in fits and starts for MannKind.
Even as Mann approaches 90, his team says he’s up to the task. “He’s an inspired
man,” said Hakan Edstrom, president and chief operating officer of MannKind, who has
worked with Mann since the company’s founding. “His mind is no older than 25 years,
even if the body is getting a little rusty.”
Second Sight, based in the Los Angeles neighborhood of Sylmar, plans to raise more
than $30 million in its offering, selling 3.5 million shares for $9 each. Mann, who will be
chairman, will own 32 percent of the shares, according to company filings.
In 2001, Mann set his sights on diabetes. His plan was to create an inhalable insulin in
powder form, which would save patients the trouble of injections. MannKind faced
challenges from the start. Before the drug maker could finish clinical trials of its drug,
called Afrezza, its future was thrown into question when New York-based Pfizer Inc.
abandoned its own inhaled insulin treatment Exubera in 2007.
Mann founded Second Sight in 1998. The company got U.S. approval in 2013 for the
first implantable visual prosthetic approved to treat retinitis pigmentosa, a hereditary
disease in which patients experience a progressive degeneration of the light-sensitive
cells of the retina.
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The device, called Argus II, is placed on the surface of the retina. It converts video
images into electrical pulses that stimulate the remaining viable cells, restoring some
vision. It’s now been implanted in about 90 patients around the world, said CEO
Greenberg, and is in trials to expand its use.
“We had spent years in animal trials with failure after failure, and it looked like,
perhaps, we could never get it to work,” Greenberg said in a telephone interview,
talking about development of the Argus II. Mann said, “The problem we’re facing is a
technical one, a mechanical engineering problem, it’s solvable. Go back and figure it
out! Make it work!’”
The company is now developing another product that would directly stimulate the part
of the brain responsible for vision, which “will be able to treat nearly all forms of
blindness,” with a market of about 5.8 million people, according to company filings. The
cortical implant is still in development, and will hopefully begin trials in humans in two
years, Greenberg said.
Joshua Schimmer, a New York-based analyst at Piper Jaffray & Co. has covered
MannKind on and off for four years. “At times, he’s been a lone voice among many
doubting investors,” the analyst said.
Mann is also known for his willingness to pour his own money into his projects. His
holdings in MannKind alone are worth $250 million, and his total wealth is estimated by
Forbes at more than $1 billion. He spent $975 million of his own funds on Afrezza and
now holds about $100 million worth of Second Sight’s shares.
“We’ve been at universities and MBA classes and students always ask Al, “So, what
do I need to be successful?’” Edstrom recounted. “He says you need a great and
validated idea for why your product will be successful in the market place.” Then,
Edstrom says, Mann’s next three slides all say the same thing: “Capital. Capital.
Capital.”
Even now, Mann has not fully recouped his investment. MannKind joined with France’s
largest drug maker, Sanofi, in a deal to commercialise Afrezza. Sanofi will pay
MannKind as much as $925 million, and the companies will share any profits.
Despite his age, Mann said he’s as tireless as ever. He gets to the office at 7 a.m. or 8
a.m. and works for about 12 hours. He was active in helping to set up the Initial Public
Offering for Second Sight, and talking to potential investors during the road show,
according to Greenberg.
“He’s joked before that he’s set a retirement date for when he’s 144 years old,”
Greenberg said. “It’s not work for him, I think, it’s just what he’s been put on this earth
to do.”
Source: Caroline Chen, www.bloomberg.com, 17 November 2014.
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RetroSense Therapeutics Granted Orphan Drug Designation
for Lead Product RST-001 for Retinitis Pigmentosa
RetroSense Therapeutics, LLC, a privately-held biopharmaceutical company, has
announced that the U.S. Food and Drug Administration (FDA) has granted Orphan
Drug designation for the Company’s lead product RST-001 for the treatment of retinitis
pigmentosa (RP). RetroSense Therapeutics is developing RST-001 as a first-in-class
gene therapy application of optogenetics designed to restore vision to those affected
by RP.
Optogenetics refers broadly to a means of conferring light sensitivity to cells that were
not previously, or natively light sensitive. By applying optogenetics to retinas in which
rod and cone photoreceptors have degenerated, RetroSense is conferring new light
sensitivity to the retina, with the expectation of improved or restored vision. RST-001 is
expected to have application to all forms of RP, independent of causative gene or
mutation.
The Company's approach to using optogenetics in vision restoration is based on
pioneering, proprietary research conducted at Wayne State University’s Kresge Eye
Institute and Department of Anatomy and Cell Biology, and Massachusetts General
Hospital. RetroSense has worldwide exclusive rights to the relevant intellectual
property from both institutions.
“We are pleased that the FDA has granted Orphan Drug status to our lead product,
RST-001,” stated Sean Ainsworth, RetroSense Therapeutics’ CEO. “This significant
milestone will enable us to continue to develop new and innovative treatments for
retinitis pigmentosa, a truly debilitating condition. We are hopeful that the benefits
associated with Orphan Drug status will better enable us to advance RST-001 through
development and ultimately into the marketplace where it may benefit many who are
suffering from blindness due to retinitis pigmentosa.”
The FDA Office of Orphan Products Development supports the evaluation and
development of products that are intended for the safe and effective treatment,
diagnosis or prevention of rare diseases or conditions. The FDA awards Orphan Drug
designation as an incentive to develop drugs and biological therapeutics for diseases
that affect fewer than 200,000 people in the Unites States. The benefits of Orphan
Drug designation include a seven year period of market exclusivity following FDA
approval, certain tax credits for clinical testing expenses conducted after orphan
designation is received, and reduced regulatory fees.
RetroSense is employing a gene therapy approach to deliver a new photosensitivity
gene to retinal cells to restore the ability of eyes to sense light. As RP is caused by
over 100 different gene defects, addressing each individually is not feasible with
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current technologies. RetroSense’s approach is designed to “install” new
photosensors, restoring vision irrespective of which gene defect is responsible for
vision loss. What this means is our approach promises application across a broad
spectrum of RP patients.
RetroSensense’s lead candidate RST-001, employs a photosensitivity gene,
channelrhodopsin-2, to create new photosensors in retinal cells and restore vision in
retinal degenerative conditions such as RP and advanced dry-AMD.
Channelrhodopsin-2 is supported by a strong body of published literature on its
efficacy and safety in animal models. Numerous studies have demonstrated the ability
of channelrhodopsin-2 to restore light perception and vision in animals with naturally
occurring or induced blindness due to loss of photoreceptors. In primate studies, the
administration of channelrhodopsin-2 was well tolerated. This approach to vision
restoration was pioneered by Dr. Zhuo-Hua Pan at Wayne State University and Dr.
Alex Dizhoor at Salus University.
RetroSense is currently at the pre-clinical stage of development and working toward
human clinical trials. RST-001 will be developed initially for retinitis pigmentosa, with
advanced dry-AMD as a follow-on indication.
It is hoped functional vision will be able to be restored to patients, however until we
have treated patients, we will not know exactly what level of vision will be restored. The
treatment involves a one-time injection into the eye. Such injections are now routine,
outpatient procedures for most retina specialists. The gene is encapsulated in a virus
“vector”. This vector has been proven safe in human clinical studies. It specialises in
delivering genes (DNA) to the cells of interest. Once the gene is in the retinal cell, it
begins to produce light-sensitive protein.
It takes some time for the light-sensitive protein to be “expressed” (produced from the
gene). We expect expression to peak and level off by about 8 weeks. Early analysis
suggests patients may experience some vision restoration in as little as 2 weeks, with
improvements through about 8 weeks – corresponding to increases in light-sensitive
protein levels. From that point, there may be additional processing that takes place
between the retina and visual cortex, which would result in additional improvements in
vision. It is expected that the treatment last many years – potentially for the life of the
patient. Animal models with an ocular gene therapy approach are seeing benefit up to
eight years, and counting.
In the initial study, Washington State University used mice with inherited blindness –
models of retinitis pigmentosa. After treatment, light response patterns in their visual
cortex were observed. Subsequently, rat models of retinitis pigmentosa were treated.
Their behaviour was observed, showing they responded to light signals in ways
expected of sighted rats. Marmosets have also been treated, showing that the gene
gets into the cells of interest and confers photosensitivity to those cells.
Sources: Ann Arbor, www.businesswire.com, 30 October 2014, and www. retro-sense.com
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Helping Blind Dogs See Could Help Fight
Human Blindness
Dogs have lent their eyesight to people who need it, perhaps since the friendship
between human and beast began. And now, mapping the genes of blind dogs could
lead to treatments for the visually impaired. By uncovering canine eye mutations,
veterinary researchers are coming closer to understanding two of the most common
diseases that cause blindness: glaucoma and retinitis pigmentosa.
It turns out that dogs' eyes are similar to humans', the veterinary researchers say, and
what goes for theirs often goes for ours, too. So much so, that a U.S. foundation for
research into blindness has funded some of their work. Andras Komaromy's research
journey began 10 years ago with a phone call from a breeder, who was watching dogs
slowly go blind from a strange retinal disease.
"I drove more than 500 miles from Philadelphia to Michigan to examine the affected
dogs," the research veterinarian said in a statement. He eventually moved there and
researched the disease at Michigan State University. The dogs were all the same
breed, Swedish Vallhunds. The hereditary disease appeared to be relatively new.
Scandinavian veterinary eye examiners began seeing it in the late 1990s.
The Swedish Vallhund is small, stocky and pointy-eared, with thick grey to red fur in a
pattern resembling that of a German shepherd. Despite its compact size, it's tough and
fearless, the American Kennel Club says – a "big dog in a small body." It's an athletic
herder and a friendly family dog. It impresses in show competitions - dashing through
"flyball" obstacle courses or walking through obedience drills.
It's also called a Viking dog, because its ancestors go back at least to those times, and
the breed almost died out during World War II in Sweden until a nobleman intervened.
Swedish Vallhunds are still not found in many places.
So, Komaromy hit the road to dog shows in Scandinavia and North America to
examine the Viking dogs. And he found colleagues Hannes Lohi and Paivi Vanhapelto
doing similar research in Finland. They covered seven countries on three continents to
examine 324 dogs, and with the dog owners' permission and supervision by an animal
ethics group, they tested blood samples from the dogs to study their genomes. The
researchers nailed the degenerative retinal disease down to a mutational defect on a
gene designated as MERTK (c-mer proto-oncogene tyrosine kinase).
They published the results last December. Problems with the gene are already
associated with incurable retinal blindness in humans. When things go wrong with the
gene, tissue in the retina can slowly atrophy. By marking the gene, they can help
breeders avoid spreading the hereditary disease, but they will also work to develop a
treatment that inhibits the mutated gene to put the brakes on the disease.
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The researchers hope it will lead to similar possibilities in humans stricken with retinal
disease, since not only the anatomy of a dog's eye is similar to a human's, but how
genes shape them is as well.
"Canine retinal disease models contribute significantly to our understanding of retinal
disease mechanisms and the development of new therapies for human patients," they
said.
Studies on blindness in another dog, also believed to be of Viking origin, have led the
same research team to make advances in the fight against glaucoma, a much more
widespread cause of blindness in humans.
It affects roughly 66 million people worldwide, the researchers said. The Norwegian
elkhound is sometimes called the "national dog of Norway." It and the Vallhund look
like they could be cousins.
It's also stocky but not as slight as the Swede and more of a hunter and guard dog
than a herder. It has similar markings but is silver-grey, the American Kennel Club
says. It has a low-key temperament but gets very attached to its family and has a hard
time being away from it.
Human glaucoma is caused by multiple factors, the scientists said in a study. But they
found that a major form of glaucoma in the elkhound is associated with a mutation on
the so-called ADAMTS10 gene.
Here, too, their work makes it possible to develop a genetic test to help breeders stop
passing on the hereditary disease. And Komaromy's laboratory is working on a
treatment for the blindness it causes.
The San Francisco-based Glaucoma Research Foundation has supported his work
with a grant.
The Norwegian Elkhound's genes were studied to locate a mutation causing glaucoma.
Source: Ben Brumfield, CNN, 3 January 2015.
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Hope for Blind as Scientists Find
Stem Cell Reservoir in Human Eye
Hundreds of thousands of people who are registered blind have been offered new
hope after scientists discovered special stem cells in the human eye which can be
altered to pick up light. Researchers at the University of Southampton have
discovered a reservoir of stem cells in an area of the eye called the corneal limbus.
And they have proven that, in the right environment, they can be transformed into
photoreceptor cells which react to light. Scientists are hopeful that implanting the
cultured stem cells in a damaged eye could reverse blindness. It could offer a
potential treatment for the hundreds of thousands of people suffering macular
degeneration or retinitis pigmentosa, which are both caused by the loss of photoreceptor cells in the eye.
And researchers were amazed to find that the cells even existed in the eyes of a 97
year old, opening up the possibility that the treatment could work for the elderly.
“These cells are readily accessible, and they have surprising plasticity, which makes
them an attractive cell resource for future therapies,” said Professor Andrew Lotery, of
the University of Southampton and a Consultant Ophthalmologist at Southampton
General Hospital who led the study.
“This would help avoid complications with rejection or contamination because the cells
taken from the eye would be returned to the same patient. More research is now
needed to develop this approach before these cells are used in patients.” So far
scientists have only shown that the concept works in the lab and are yet to implant
them in a human patient. But they are hopeful that the cells could be taken from a
patient, grown in the lab and transplanted back into the eye. Clinical trials should begin
within five years.
Charities are optimistic that it could herald a brighter future for people with sight loss.
Clara Eaglen, Royal National Institute of Blind People (RNIB) UK Eye Health
Campaigns Manager, said: "At RNIB we talk to people everyday who tell us about the
huge impact that losing their sight has on daily life, so this is very interesting research.
The study shows that you can grow stem cells and make them act like light sensitive
cells, a big step forward in helping patients with conditions such as age-related
macular degeneration where damage has occurred to the light sensitive cells.”
"These cells can then be taken from a patient, changed, and replaced - reducing the
risk of rejection which is exciting. We are hopeful that stem cell technology will
significantly change the way in which people with sight loss are treated over the next
decade." The research was published in the journal PLOS One.
Source: Sarah Knapton, PLOS One, 1 October 2014.
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Developing an Instrumental Activities of Daily Living Tool as Part
of the Low Vision Assessment of Daily Activities Protocol
PURPOSE
To determine the validity, reliability, and measurement characteristics using factor and
Rasch analysis of the Very Low Vision Instrumental Activities of Daily Living (IADLVLV) in persons with severe vision loss.
METHODS
From an initial pool of 296 tasks, 25 were shortlisted after conducting a Delphi survey
with persons designated legally blind. Using further input from occupational therapy
and low-vision professionals, 11 activities were chosen to be pilot tested. Forty legally
blind participants (better eye visual acuity < 20/200) underwent clinical assessments
and functional tests as well as the 53 IADL tasks related to the 11 activities. The task
pool was refined and condensed using factor and Rasch analysis.
RESULTS
Based on iterative principal component analyses, tasks were grouped together into the
following domains: reading signs/information access, signature placement, clothes
sorting, shelf search, gesture recognition, clock reading, and table search. A final
selection of 23 tasks yielded satisfactory measurement characteristics, differentiated
between at least four different levels of IADL performance (person separation of 3.8),
and had adequate task difficulty for the tested sample (person mean _0.61). In
multivariate analyses, only visual acuity and percent of remaining visual field were
associated with IADL performance.
CONCLUSIONS
Using a large item pool, participant, and expert input, as well as factor and Rasch
analysis, we designed a valid and reliable assessment to measure vision-related IADL
performance in persons with severe vision loss. This assessment tool can be used in
clinical sight restoration trials.
What is Rasch Analysis?
The Rasch model, named after Georg Rasch, is a psychometric model for analysing
categorical data, such as answers to questions on a reading assessment or
questionnaire responses, as a function of the trade-off between (a) the respondent's
abilities, attitudes or personality traits and (b) the item difficulty. In addition to
psychometrics and educational research, the Rasch model and its extensions are used
in other areas, including the health profession and market research because of their
general applicability.
Source: Robert P. Finger, Shane C. McSweeney, Lil Deverell, Fleur O’Hare, Sharon A. Bentley, Chi D. Luu,
Robyn H. Guymer, and Lauren N. Ayton. Centre for Eye Research Australia, University of Melbourne, Royal
Victorian Eye and Ear Hospital, Melbourne, Australia. Deakin Optometry (School of Medicine), Deakin
University, Geelong, Australia.
Investigative Ophthalmology and Visual Science, December 2014, Vol. 55 No. 12.
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A Double-Blind, Placebo-Controlled Study on the Effects of
Lutein and Zeaxanthin on Photostress Recovery,
Glare Disability, and Chromatic Contrast
PURPOSE
Past studies have shown that higher macular pigment optical density and lutein and
zeaxanthin supplementation are related to improvements in glare disability,
photostress recovery, and chromatic contrast. This study assessed those links using a
randomised, double-blind, placebo-controlled design.
METHODS
The visual effects of 1 year of supplementing lutein (10 mg/day) and zeaxanthin (2
mg/day) were investigated. One hundred and fifteen young, healthy subjects were
recruited and randomised into the study (58 received placebo, 57 lutein and
zeaxanthin). Several dependent measures were collected at baseline and then once
every 3 months:
- serum lutein and zeaxanthin measured by high performance liquid
chromatography (HPLC);
- macular pigment optical density measured using customised heterochromatic
flicker photometry;
- photostress recovery assessed by measuring the time needed to recover visual
acquisition of a grating target after 30 seconds of an intense xenon white flash
exposure;
- glare disability evaluated as the energy in a surrounding annulus necessary to
veil a central grating target; and
- chromatic contrast assessed by measuring thresholds for a yellow grating target
superposed on a 460-nm background.
RESULTS
Macular pigment optical density increased significantly versus placebo at all
eccentricities (10, 30, 60, and 105 minutes from the centre of the macula). Serum
lutein and zeaxanthin also increased significantly by the first follow-up visit (at 3
months), and remained elevated throughout the intervention period of 1 year.
Chromatic contrast and photostress recovery time improved significantly versus
placebo. Glare disability was correlated with macular pigment density throughout the
study period but did not increase significantly in the treated group.
CONCLUSIONS
Daily supplementation with lutein and zeaxanthin resulted in significant increase in
serum levels and macular pigment optical density and improvements in chromatic
contrast and recovery from photostress. These results are consistent with past studies
showing that increasing macular pigment optical density leads to improved visual
performance.
Source: Billy R. Hammond, Laura M. Fletcher, Franz Roos, Jonas Wittwer, and Wolfgang Schalch. Vision Sciences and
Human Biofactors Laboratories, Department of Psychology, University of Georgia. Investigative Ophthalmology and
Visual Science, December 2014, Vol. 55 No. 12.
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Major Depressive and Anxiety Disorders
in Vision Impaired Older Adults
PURPOSE
We assessed the prevalence of subthreshold depression (current depressive
symptoms but no disorder) and anxiety, with major depressive, dysthymic, and anxiety
disorders (panic disorder, agoraphobia, social phobia & general anxiety disorder) in
vision impaired older adults and compared these estimates to those of sighted peers.
METHODS
Cross-sectional data was analysed based on telephone interviews with vision impaired
older adults aged 60 years or above with a visual acuity of +0.30 logMAR (20/40
Snellen) in the best eye from outpatient low vision rehabilitation centres, and face-toface interviews with community-dwelling sighted peers. To determine prevalence rates,
the normally sighted population was weighted on sex and age to fit the vision impaired
population. Logistic regression analyses were used to compare the populations and to
correct for out-riders.
RESULTS
The prevalence of major depressive disorder (5.4%) and anxiety disorders (7.5%), as
well as the prevalence of subthreshold depression (32.2%) and subthreshold anxiety
(15.6%), were significantly higher in vision impaired older adults compared to their
normally sighted peers (P < 0.05). Agoraphobia and social phobia were the most
prevalent anxiety disorders in vision impaired older adults.
CONCLUSIONS
This study shows that depression and anxiety are major public health problems in
vision impaired older adults. Research in this population on psychotherapeutic and
psychopharmacologic interventions to improve depression and anxiety is warranted.
Source: Hilde P. A. van der Aa, Hannie C. Comijs, Brenda W. J. H. Penninx, Ger H. M. B. van Rens, and Ruth M. A. van
Nispen. Department of Ophthalmology, Department Psychiatry and Institute for Health and Care Research, VU
University Medical Centre, Amsterdam, The Netherlands. Department of Ophthalmology, Elkerliek Hospital, Helmond,
The Netherlands. Investigative Ophthalmology and Visual Science, February 2015, Vol. 56 No. 2.
Communicating well with dual sensory loss group
Able Australia and HEAR Service are planning to run a
four session group for people with combined vision and
hearing impairments during 2015. The group will focus on
a variety of communication strategies to support people
with dual sensory loss to manage better in a variety of
communication situations. For more information or to
register please contact Meredith Prain at Able Australia
on 9861 6202, or Meredith.prain@ableaustralia.org.au
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New Mobile Phone App “Be My Eyes”
There’s a brand new app available for both IOS and Android that is set to make life a
whole lot easier for people who are blind or vision impaired when they are alone and
do not have a person physically present to assist them with the provision of visual
information which is often critical to accomplishing a task. It’s called “Be My Eyes”.
Volunteers throughout the world can sign up to offer their assistance via video chat
through their IOS or Android device. A person who is blind can download the app and
register, so that whenever they need assistance with obtaining visual information, they
can send a request and be linked with one of the volunteers via video. The camera on
the device of the person requesting assistance relays the information required to the
sighted volunteer, who then relays it back verbally. The types of assistance one can
request are only limited to one’s imagination! We are already hearing stories of people
who for example, needed to know when their milk or yoghurt was out of date.
Somebody may wish to know the instructions for heating up a frozen meal, or the
details on a container or box of medication.
If it can be captured on camera, chances are that a volunteer will be able to interpret
the information and relay it back. It sure beats waiting around until somebody is
physically present to get the information, and has the potential to alleviate many
moments of frustration in which one reflects that a bit of sight, even for thirty seconds,
might just be enough time to capture the required information, rather than waiting for
what might be an unspecified amount of time to find out something really simple, but
which alludes a person who is blind or vision impaired. It uses existing technology with
which people are widely familiar and applies it to a problem that is significant for those
that it affects. While the technology may not be innovative in itself, the way in which it
is employed certainly is. The result is an app that can not only make a real difference
to blind users, but enables altruism and develops understanding among those who are
able to see. The app was conceived by Hans Jørgen Wiberg, who is visually impaired
himself.
“Be My Eyes” can be downloaded from the IOS and Android app stores. To offer your
services as a sighted volunteer, go to http://www.bemyeyes.org. You might just make
somebody’s day a whole lot less frustrating!
Be My Eyes is a new mobile app that aims to help blind people in
situations where they need to see something
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Choroideremia CHM for Understanding
“Choroideremia CHM for Understanding” is a new Facebook community which has
grown to over 500 members in about three months, which has surpassed all
expectations of the founder of the site, Michael Längsfeld, from Holland. Community
members have come together from more than 30 countries to discuss important topics,
such as research and tools for support. Michael is proud when he finds interesting
exchanges of experiences between the members, which is particularly important for
coping with and personally accepting this rare disease. Michael says: “Each member
can communicate here in his or her preferred language. Please invite all CHM
affected, CHM carriers, researchers and further CHM interested people to our
community, so we can always discuss new opinions and views in the future.”
To join the Facebook Community “Choroideremia CHM for Understanding”, go to:
www.facebook.com/groups/1388456481446308/?fref=ts,
What is choroideremia?
Choroideremia (CHM) is a rare inherited disorder that causes progressive loss of
vision due to degeneration of the choroid and retina. It occurs almost exclusively in
males. In childhood, night blindness is the most common first symptom. As the disease
progresses, there is loss of vision, frequently starting as an irregular ring that gradually
expands both in toward central vision and out toward the extreme periphery.
Learn Ten Pin Bowling
Blind Sports Victoria and the Victorian Ten Pin Bowling Association are partnering up
to bring the Bowling 101 program to people who are blind or vision impaired, their
family and friends. The Bowling 101 Program is designed to introduce the sport to new
participants as well as develop the fundamental skills of current bowlers.
Bowling 101 consists of eight sessions that steadily introduce new skills each week.
The emphasis of the program is for participants to have fun, learn new skills and
improve their bowling. The Blind Sports Victorian Ten Pin Bowling Association
program is open to people who are blind or vision impaired, their family and friends.
When:
Time:
Cost:
Where:
Every Thursday from 12th March 2015 for 8 weeks
11 am
$5 per session (Each participant will receive a welcome pack)
AMF Moorabbin, 938 Nepean Highway, Moorabbin, Vic, 3189
For registration and further information contact:
Blind Sports Victoria on (03) 9822 8876 or
Ten Pin Bowling Victoria on (03) 9532 2219.
Source: Blind Citizens Australia Parent News, February 2015.
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Airline Carrier Announces New Policy for Disabled Passengers
Australian airline, Virgin Australia, has made significant
changes to its policies to make it easier for people with a
disability to access lower airfares, in a move welcomed by
the Public Interest Advocacy Centre (PAIC).
As part of the change, people travelling with a carer can
now make flight bookings by phone up to 331 days in
advance at the internet discount rate, without the
requirement to enter their carer’s name at the time of
booking.
The move comes following the resolution of a complaint to the Anti-Discrimination
Board of NSW. The complaint was made after Jenny Brown found that she was
unable to take advantage of discount airfares when booking flights for her disabled son
because of Virgin Australia’s requirement to submit the name of her son’s companion
carer at the time of booking.
“My son travels with a carer arranged by a nursing agency. We don’t usually know their
name more than two weeks in advance when the agency finalises their roster, so we
have had to book at the last minute,” Ms Brown said. “Usually only expensive flights at
the least popular, least convenient times are available.”
PIAC Senior Solicitor Camilla Pandolfini, who represented Ms Brown in the case,
welcomed the changes. “They make air travel more affordable and accessible for
people with disabilities,” Ms Pandolfini said. “Travel is an essential service and this
takes us one step closer to equality.”
Individual Grants Program
The Steve Waugh Foundation Individual Grants Program offers financial grants to
children ages 0 – 25 years affected by a rare disease and their families. Grants must
meet a criteria and be approved through a professional application process. Conditions
to grants apply and may be for the purchase of equipment, medicine, treatment,
therapies and other forms of assistance that improve the quality of life for the child and
their family. There is no limit on the grant amount that can be applied for.
Applications for individual grants are open 3 times a year and assessed by a panel of
volunteer professionals. The next grant round is open from March 1 – March 31.
Please refer to the website under Grants to download the Application Guide and
Application Forms. Website: www.stevewaughfoundation.com.au
Source: Blind Citizens Australia Parent News, February 2015.
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Question Time
With Greg Ingram
1. What’s your earliest memory?
Being put in a dumbwaiter (freight
elevator or lift) at my dad’s hotel in
Fitzroy when I was about 2 or 3.
2. What’s your idea of a good time?
I used to go out and have a dance but
these days it’s having a nice meal
where the music is good but not loud
so you can still talk.
Snow
3. What’s your ideal holiday
destination?
Where the temperature is mid 20s, no
humidity and the locals are helpful and
friendly with a nearby beach and bar.
4. Who inspires you?
No one in particular – the brave men
and women who went off to war not
knowing if they would return can only
be imagined.
5. What makes you angry?
People who are able to gain
employment but choose not to, and
make excuses for continuing to do so.
6. What’s the hardest thing
you’ve ever done?
Breaking up with a partner.
7. What’s the best thing you’ve
ever done?
I gave up smoking 20 years ago.
8. What do you like about Retina
Australia (Vic)?
If there is any significant medical
news it is passed on to those who
may benefit.
9. If you could change one thing
about the world, what would it
be?
End all conflicts as there is no
winner in the end – just mounting
casualties on both sides.
10. What’s the most important
thing you’ve learnt about life?
Time goes by so quickly as you get
older so you need to make the
most of every day. Don’t be in a
hurry to grow up!
Last Word
I met a man who could not see, yet he seemed happier than me.
I asked him "Why?" without his sight, and everything as dark as night.
He said, "To mourn what I have not, would cost me more than I have got."
He then described a lovely scene, he must have witnessed in a dream.
He spoke of a peaceful summer breeze, of resting under big shady trees.
Of flowers growing by a stream, a world that's calm and so serene.
And as he spoke I realised, he saw these things without his eyes.
The more he shared I was to find, it was not he, but I who was blind.
RANDY LEE RICHARDS
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