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Spring Newsletter
November 2004 No. 23
1 From the Editor
2 From the President's Desk
3 Research - Retina Internnational Conference
4 Two Otago Medical Students carry out Retinal Research
5 Treatments - Macugen on track for FDA approval
6 Address by Dr Marion Maw, Chair of the Retina NZ Scientific & Medical Advisory Board
7 Coping - Ready Anything Easily Just Point
8 People - Tim Prendergast - A Golden Paralympic
9 Profile of Mary Dobbie
10 Branch News, Letter, Notice
1 From the Editor
This will be the last time I edit the Retina newsletter. A few months ago
I indicated my intention to retire from this most interesting and enjoyable
job and a new Editor has now been found. She is Susan Mellsopp of
Hamilton, also a Retina member. Resigning as Editor also means that I am
no longer a part of Retina's Executive committee.
I have now been editing quarterly newsletters for the blind for the past 15
years, so it will seem strange for a while but old habits and interests die
hard. I will still be reading scientific papers and articles about low
vision and blindness due to retinal disorders and occasionally write about
things that interest me.
I leave in place a most talented and younger committee, all of whom are
committed to Retina's mission, so I will enjoy hearing about what's
happening through this newsletter. It has always been my intention to
bring you the latest published scientific research about the retina,
information about how to cope, news from the Executive and branches, and
letters from and articles about our members. As you will realise by now,
we have a lot of wonderful members, both young and old, many of whom have
successfully re trained for different careers once their retinal disorder
has been diagnosed. This issue features two of them Tim Prendergast, a
young sportsman in his twenties and Mary Dobbie, still going strong at the
age of ninety one.
For the first time I have been able to introduce a 'Treatments' section,
both articles being about Macular degeneration. But sadly, so far there is
virtually no treatment available for people with any type of RP. However,
a publication caught my eye in the Journal of Biological Chemistry that
something as simple as a zinc imbalance in the body may be the cause of RP.
If this is proved to be so, then perhaps RP's can retain their sight by
simply taking a zinc supplement! But every different type of RP
inheritance will require a different type of treatment and each one has to
be proved by years of animal and human trials before it can be released for
general use.
I will still be one of the Retina peer supporters and would love to hear
from any of you if you want to chat or write or email me about your vision
problems. In this way I have got to know so many of you over the years
since Retina started in 1988. So I'll sign off now by wishing you all the
very best in life and hoping that you all have a wonderful Christmas holiday.
June Ombler
Apt. C16, Rita Angus Village, 66 Coutts Street, Kilbirnie, Wellington.
Phone: 04 387 4553; Email: < jombler@xtra.co.nz >
2 From the President's Desk
Actually, my new computer has taken over my dining table until I get the old one off my desk. The old computer decided it was full and was finding ordinary tasks too onerous.
It has been a busy time for Retina NZ since the last newsletter. Now the days are longer and brighter, I hope you have your sunglasses on whenever you venture outdoors. One of the lectures I attended at the Retina International conference was about how people with retinal disorders are more susceptible to damage from sunlight. So we need to protect our eyes to preserve whatever sight we have.
We had a very successful AGM and conference in Christchurch in September. Some visitors came for just part of the day, but more than 50 people were there at any time. My thanks go to Peter, Petronella and Pip of Christchurch who helped to organise the event. Peter had just arrived back from an overseas trip and wasn't due back at work until the Monday, but he came in on the Friday to set up. Some of the day is covered elsewhere in this newsletter, but we do have tapes available if anyone particularly wants to hear what was said.
The Executive met again early on Sunday for a meeting. One task we had to complete was to appoint a new editor. Sue Mellsopp of Hamilton will be taking over that function later this month and I am sure she will introduce herself in the next issue. We managed to give June Ombler a flower spray and a book for her many years of hard work, but she did not want a fuss made. Watch out next year for an article about June and her many experiences. She was a founding member of NZ Retinitis Pigmentosa Society in 1988, and it is her energy and driving force which has made Retina NZ the organisation it is today. She has served as Vice President, President, Secretary, International Delegate and latterly as Editor. She leaves a legacy to be proud of.
Although there has been little change in the membership of the Executive, many of you are new, so I asked the Executive to send me a couple of lines about themselves.
Janet Palmer who is our National Secretary, lives in Wellington, with her husband, Keith, and has 2 adult children. She manages a secretarial service, and her interest is music. Janet enjoys singing and belongs to two choirs.
Camille Guy is our Vice President. A freelance journalist and oral historian, writing regularly for the NZ Listener and University of Auckland's Ingenio magazine. Lost central vision due to myopic retinopathy about four years ago. Uses JAWS screen reader on computer.
Fraser Alexander from Auckland As a member of the Retina New Zealand Executive since 1998 "I have been privileged to be involved at a time when our organisation's membership has grown massively, our peer support programme has been implemented successfully and we have built significant relationships with allied agencies and decisionmakers of significance with
respect to our goals and missions. I have Choroideremia and work full time in fundraising and study part time towards a Master of Business degree".
Elizabeth East from the Kapiti Coast myopic macular degeneration. Enjoys using her well developed communication, networking and administration skills gained in previous employment in the HR field to run the telephone based peer support scheme.
Denise Keay from Wellington has worked in a wide range of policy or human resource management positions, primarily in the public sector. With a history of retinal detachments and other visual problems associated with high myopia, Denise has a particular interest in the welfare of those whose levels of visual impairment have a major impact on their everyday lives (employment, housing, transport, friendships, leisure, health, and well being) but who are not eligible for any form of assistance from established agencies like the RNZFB and whose attempts to help themselves are all too often met with rebuffs or derision.
Kaye Clark from Wellington Kaye is the only fully sighted member of the Executive and brings her research and policy analyst background skills to Retina NZ. She is representing us on the recently formed Vision NZ group, a collaboration of organizations working together to reduce vision loss.
Lynn Keogh from Dunedin is Chairperson/Secretary of Otago/Southland Branch. "I am also a member of the Retina Peer Support team. At present I am trying to upgrade the website with the help of Robert Strong".
I work as an accountant in Christchurch. When I have any spare time left from Retina stuff, I love to get outside in the garden as well as walking and exercise. I am active in Toastmasters, and would like some time over to play my piano and flute. Roll on Christmas break!
Kaye Newton
Phone: 03 3795 807
Email: president@retina.org.nz
3 Research
Retina Internnational Conference
"Focus on Seeing 2004" - The 13th Bi-Annual World Congress of Retina International (RI) in conjunction with the RI Continuing Education Programme and General Assembly,
June 30/July 3
Reported by Fraser Alexander, Retina NZ International Delegate
The NZ delegation of Kaye Newton, Fraser Alexander and Christina van der Wal represented Retina New Zealand at each of the forums above held in Noordwijk, The Netherlands in early July this year. The event was attended by about 550 people from all over the world. Many of the world's leading scientists from a large range of disciplines from molecular biology to electrophysiology, from genetics to prosthetics and from optobionics to optometrics presented their findings in the search for treatments and cures for retinal degenerative and other ophthalmic conditions .
The conference kicked off with the continuing education day which proved to be an excellent chance to learn from fellow Retina International delegates on topics ranging from fundraising to forming a SMAB. Electronic copies of presentations are available from me on request. The Continuing Education day is an excellent forum for sharing ideas on how to achieve the key objectives of Retina International at a national level. As Kaye and I agreed, New Zealand performs above the odds in peer support and public education, given the scale of our resources but we need to improve our game in areas such as patient database management and research collaboration.
RETINA INTERNATIONAL GENERAL ASSEMBLY
Kaye Newton and I represented Retina New Zealand at the Retina International (RI) General Assembly. There are now 21 countries that are full members of RI, all of which attended the event, and another 20 countries are at various stages of preparing for full membership. As more patient groups develop around the world, not only are more RP sufferers supplied with information and support but also, in time, some of these countries may be able to develop their own research programmes and contribute to the worldwide goal of finding cures and treatments.
Due to the quantity of business to be covered, the RI General Assembly was a long day, beginning at 8.30 am and concluding not long before 7.00 pm. The minutes of the meeting can be found by going to www.retina international.org and following the links to conferences. I will now summarise some of the key decisions made.
* Regarding having more than one organisation from a country: More than one from a country may be accepted as full members, as long as the aims and objectives substantially differ from those of the existing member.
* The officers of the management committee were appointed. The size of the management committee was increased and all candidates appointed.
* Presentations were made by the hosting and bidding countries for the 2006 and 2008 World Congress. I remain totally confident New Zealand can undertake the hosting of the 2010 Congress and look forward to Retina New Zealand making a bid at the 2006 Congress in Brazil.
* If you go to the Website you will note that Retina International has adopted a new logo, quite different from the old one as it is thought to be outdated. While member countries are expected to use the new logo, it can be used alongside, rather than in replacement of, our Retina NZ logo.
RETINA INTERNATIONAL WORLD CONGRESS
After a night discovering the flavours of Amsterdam, the next day dawned as day one of the World Congress. A Retina International World conference is about the latest advances in scientific and medical research, low vision aids and issues related to vision loss caused by retinal degenerative diseases. Essentially, it is for people with retinal dystrophies and their families along with vision care professionals and others interested in learning about retinal degenerative conditions and other related diseases of the retina.
The Retina International environment offers a unique opportunity to:
* learn from leading scientists, ophthalmologists, and ophthalmology researchers about treatment initiatives and how patients and their families can practically assist the development of treatments and cures.
* participate in coping seminars that enlighten and encourage and
enthusiastically promote the ideologies of lateral thinking and embracing technology.
* visit informative exhibits of equipment, research programmes and rehabilitation techniques.
* participate pro actively in international networking opportunities that result in mutual benefits involved with advocacy, knowledge sharing, peer support and collaborative programmes.
As usual, the tone of the scientific presentations was very upbeat about progress in the laboratory and now, for the first time, we received news that a number of clinical trials have started or are planned. We also received "hot off the press" good news that the EU (European Union) has approved (subject to contract negotiations) providing Euro 10 million to fund retinal research in several European countries.
Apart from the good research news, there is also the growing realisation that finding cures and treatments for RP in the laboratory is only the start of a long process that continues through enormously expensive clinical trials, to various stages of government approval and the need to get pharmaceutical companies involved in the process of making treatments available to patients. Over the coming years we will hear much more on these subjects.
RESEARCH FINDINGS SUMMARISED
Saving central vision
The breaking news released at the congress was the identification and characterization of a rod derived cone protection factor by Dr Thierry Leveillard and colleagues of the Pierre and Marie Curie University in Paris. Researchers have long suspected that the death of cone cells in Retinitis Pigmentosa is a secondary process. RP is primarily a disease of the rod photoreceptors, causing night blindness and loss of peripheral (side) vision. The central vision loss only occurs later in the disease process when difficulties with reading and other fine focus visual tasks begin. They suspected that the death of the rod photoreceptors somehow causes the death of the cones and Dr Leveillard 's findings now confirm this theory. His team discovered a cone viability factor, (RdCVF) that is expressed by the rods and as the rods die and stop producing this trophic factor, the cones start to die as well. His team have identified the gene that codes for RdCVF and they have successfully manipulated the gene expression in a mouse model of RP. This exciting discovery offers new treatment possibilities for Retinitis Pigmentosa.
Carriers of genes for retinal degeneration
Professor Ed Stone of the University of Iowa was one of the keynote speakers. He is a leading researcher in the field of Ophthalmogenetics and his new theory on the rate of carriers for RD should be a wake up call to all health officials and planners. Dr Stone estimates that one in five people in the general population are carriers of a genetic mutation for retinal degeneration. This is more than a tenfold increase in the previous estimation of one in eighty in the population.
Age related Macular Degeneration
Dr Stone's group at Iowa are also responsible for the exciting new discovery of a gene linked to Age related Macular degeneration (AMD). The gene Fibulin 5 is normally involved in the production of a protein called elastin. This type of protein helps to produce elastic fibres that maintain the integrity of tissues like skin and blood vessels. These are also found in Bruch's membrane which underlies the RPE layer in the retina. Although only 2% of the 402 patients screened had the gene mutation, the findings were "scientifically significant". Researchers are now generally in agreement about the genetic predisposition in AMD, which probably then becomes manifest in the presence of appropriate environmental factors. Excellent papers on genetic, environmental and other aspects of AMD were given by Professors Alan Bird, Joe Hollyfield, Paulus De Jong and various other speakers.
Micro arrays
The buzz word at the congress was definitely the "chip". These micro arrays can be used to screen for gene mutations in a few hours. Although they will only identify known gene mutations they will certainly assist in rapid linkage for isolated RP cases that may not be amenable to traditional linkage studies. A call was made to RI delegates to join an international consortium to fund the RP chip.
Vitamins, carotenoids and other supplements
There is still no final word on the effect of Lutein on rate of visual loss. The results of the 5 year trial may shed some light on this. The fact that Lutein supplementation does increase the density of the macular pigment is undisputed. Patients taking extra Lutein state that the addition of Lutein decreases sensitivity to sunlight. Consult your eye specialist before embarking on any supplementation. Remember that high doses of Vitamin A should never be taken by pregnant women or smokers.
Retinal and cortical implants
There has been definite progress in both the artificial retina and the cortical chip implanted into the visual cortex of the brain. While neither of these will be commercially available in the next 3 years, the results presented at the congress were truly encouraging.
Hope for the future
Dr Gerald Chader, Chief Scientific Officer of the American Foundation Fighting Blindness gave an elegant paper to the plenary session titled Retinal Degeneration: Progress in Basic Science and Movement to Clinical trials. Dr Chader again inspired the gathering with appropriate expressions of optimism and challenging calls for collaboration with scientists and ophthalmologists. Clinical trials are in progress RIGHT NOW! Proof of principle for several types of therapies has been established. Other basic work in the field of gene therapy, transplantation, stem cell research, pharmaceutical research, nutrition and electronic implants, show varying degrees of promise. We can treat a few human RD conditions and in many cases we can cure RD in animal models.
What do we need to do to meet the challenge?
Retina New Zealand, in conjunction with its Scientific and Medical Advisory Board is developing a patient database which will increase the likelihood of a New Zealander with a Retinal dystrophy being involved, to a varying degree, in medical and scientific research that ultimately leads to treatments. While we don't at this stage know how the database will look and precisely how the data will be gathered, my advice to you is to stay tuned to find out what you will need to do.
The need has never been more critical than now for patient databases with large numbers of files. Clinical researchers will require significant numbers of patients with specific genotypes and phenotypes in order to carry out trials that present results that are statistically reliable and valid.
6 Address by Dr Marion Maw, Chair of the Retina NZ Scientific & Medical Advisory Board (SMAB), to their Annual General Meeting held in Christchurch in September, 2004
It is a pleasure to again attend the annual general meeting of Retina New Zealand.
A few weeks ago the XIth International Symposium on Retinal Degenerations was held in Perth, Australia. Post doctoral fellow Dr Shubiao Wu and myself attended in our capacity as researchers while Auckland ophthalmologists Drs Dianne Sharp and Rachel Barnes attended on behalf of the Scientific and Medical Advisory Board of Retina New Zealand. It was the first time Shubiao and Rachel had attended this biennial meeting and about ten years since Dianne had participated.
I would like to tell you about a couple of conference highlights. Firstly Dr Paul Sieving, who is currently Director of the National Eye Institute in the USA, gave a lecture on our past and present understanding of X linked retinoschisis. Later Dr Laurie Molday gave a talk on gene therapy in a mouse model for this disorder. The disorder involves splitting apart of the retinal cell layers. In retinal detachment, the splitting of layers occurs between the neural retina and the retinal pigment epithelial cells. But in retinoschisis, the splitting occurs between layers within the neural retina itself. I was fascinated to learn that a technique called ocular coherence tomography enables researchers to see this phenomenon in the intact eye. This means that there will be a non invasive method to follow the progress of patients, and perhaps the response to potential treatments. Initial gene therapy studies have been very encouraging and it seems that the therapy may even be able to provide a degree of rescue to retinas in which the gene therapy was initiated after the disease processes had already begun. Reversal of an ERG abnormality was observed suggesting that there was functional rescue of light signalling pathways within the retina.
During discussion, it was suggested that this condition might be one of the first retinal disorders in which gene therapy will be attempted in human patients. X linked retinoschisis is a more common condition than RPE65 related retinal degeneration: the condition in which gene therapy has been applied to the Briard dog model. Probably there are only a few hundred RPE65 patients in the entire USA.
Another interesting talk concerned identification of a gene for a protein called rod derived cone viability factor. It has been known for some time that if the rods in a retina die, then the cone photoreceptors will eventually also die. By contrast, if the cone photoreceptors die, then the rod photoreceptors can survive. Various experiments have suggested that rod photoreceptors release one or more substances that are required for cone survival. If the rods die, then the substance is absent and so the cone photoreceptors die too. If it is not possible to prevent the rod photoreceptors from dying, it might still be very useful to artificially provide the remaining cone photoreceptors with these substances. Accordingly, it is exciting that one such substance has now been identified. No doubt there will now be a lot of follow up work to investigate how this substance works and to see if it is a useful supplement in retinal degeneration models.
Prof Dryja gave a plenary lecture on the genetics of RP and allied diseases. He talked about the progress to date and gaps that remain. He estimated that about 50% of the autosomal dominant genes remain to be identified, and that 80 90% of X linked RP cases involve the RPGR gene. To date, none of the recessive RP genes has been responsible for a major percentage of cases. Any such major gene would probably have been found by now. This suggests that many more recessive RP genes, each perhaps responsible for less than 1 2% of the cases, may remain to be found.
There was a session on the importance of glucose metabolism, oxygen and light in retinal degenerations. The healthy retina has a high metabolic rate and uses a lot of glucose and oxygen. At night glucose levels decrease and light detection sensitivity of the retina also decreases, especially in the macular region. Similarly over medicated diabetics or marathon runners may also experience a transient loss of central vision. A Dr Robert Barlow and colleagues reported on their studies of a GE mouse in which the glucogon receptor gene had been knocked out. This line of mice is chronically hypoglycaemic, i.e. has low blood sugar levels and by 12 months of age, these mice became retinal degenerate.
In another talk Professor Jonathon Stone, who leads an Australian research team, talked about the role of oxygen. Remember that the healthy retina uses a lot of oxygen. In the degenerate retina, the dying cells use less oxygen and retinal oxygen levels rise. Prof Stone suspects that these higher oxygen levels are toxic and lead to further cell death. Interestingly enough, apparently patients with RP and diabetes rarely get diabetic retinopathy. My impression is that this may be because of the role of low oxygen levels in stimulating abnormal blood vessel growth in the retina of a diabetic person.
Finally someone from Peter Humphries group gave a talk about the use of a RNAi based mutation independent approach to dominant RP. RNAi is a relatively new and very impressive way of switching OFF a gene by destroying the RNA messages from the gene. These RNA messages are used as the instructions for production of the corresponding protein. For example, a large number of different mutations in the rhodopsin gene are each capable of causing RP. The approach of Prof Humphries group was to use RNAi to destroy all rhodopsin RNA, ie from both the healthy and the damaged copies of the rhodopsin gene. Meanwhile an artificial rhodopsin gene that had been engineered to be resistant to RNAi, was being introduced to ensure that healthy rhodopsin would be made. This approach avoids the challenge of trying to turn off the damaged gene without turning off the healthy gene as well.
4 Two Otago Medical Students carry out Retinal Research
This summer two medical students will contribute to a long term research programme to understand an inherited retinal disorder that affects a large New Zealand whanau. Both students will be supervised by Dr Shubiao Wu and Dr Marion Maw, Biochemistry Department, University of Otago.
Abdulmnaem (Monier) Alshoarb, a third year medical student at Otago University has been awarded The SA and GJ Ombler Charitable Trust Summer Scholarship. His topic is "A mouse model for inherited blindness: characterisation of an antibody for detection of the causative protein". Monier will be testing the specificity of a newly generated antibody to a protein called Cacna1f. In humans, damage to the CACNA1F gene causes the inherited retinal disorder X linked incomplete congenital stationary night blindness. If time permits, Monier will also determine the labelling pattern in mouse retina of a commercially available antibody to the closely related protein Cacna1d.
The same laboratory will host Moana Wyllie, a second year medical student at Otago University. His topic is "Detection of ZENK, a gene implicated in short sightedness, in mouse retina". Individuals affected by inherited retinal disorders often develop long or short sightedness. In the healthy eye, the retina is able to determine whether images are in plus or minus defocus and to modulate eye growth so that the plane of focus and the retina will coincide. The molecular basis of the mechanism that ensures axial eye length is appropriate for the refractive power of the lens and cornea remains to be determined. Expression of the ZENK gene in specific retinal cells has been implicated in several animal models. Moana will carry out initial studies to detect ZENK gene activity in mouse retina. He will be supported by a Summer Studentship in Maori Health Research from the Health Research Council of New Zealand.
New Clues to Hereditary Blinding Disease (RP) Found
Dartmouth Medical School researchers have discovered a critical role for
zinc in RP. The amount of zinc, a trace metal naturally absorbed by the
body, can determine whether a key protein for vision functions normally or
misfolds. An inability to successfully bind zinc to rhodopsin, a light
receptor in the eye, can trigger RP, a degenerative disease that leaves many patients legally blind by the age of 40.
The research, appearing as the "Paper of the Week" in the August 20 issue
of the Journal of Biological Chemistry (JBC), is the first confirmation
that zinc is present and plays a significant role in the normal folding and
functions of rhodopsin, and if defective, leads to retinal degeneration.
If there is not enough zinc in the body or if there is a mutation in the
zinc binding site, the protein rhodopsin will misfold and break down,
triggering cell death, degeneration of the retina and eventually blindness.
Zinc has a strong presence in the body, the average person has 2.3 grams
of zinc, making it the second most prevalent trace metal behind iron.
For more information contact : < DMS.Communications@dartmouth.edu >
5 Treatments
Macugen on track for FDA approval
From the Macular Degeneration Partnership, 23 September 2004
The first of the long awaited antiangiogenic drugs for wet macular degeneration has cleared the final hurdle for FDA approval and may be available for patients in a few months. Macugen was given "fast track" status to allow the review to take place in the shortest time possible. A final decision is expected December 17. If the drug is approved, it may reach the market in the United States as early as January 2005. Regulatory filings have also been submitted to market the drug in Europe and Canada. The drug was developed by Eye Tech Pharmaceuticals and will be distributed by Pfizer Inc.
Macugen is injected directly into the eye and works to halt the growth of the problematic blood vessels in wet macular degeneration. It has been shown to slow the vision loss but does not result in improved vision. There were some safety concerns early in the research, but these have been satisfactorily addressed.
So far, they have 54 weeks of follow up after the treatment. At that point, 70% of Macugen patients had lost fewer than three lines of vision, while 55% of placebo patients lost that much vision. Since wet AMD is a progressive disease, anything that will slow that progression is of interest. Part of the good news about this drug is that it appears to be effective for all types of wet macular degeneration.
One of the potential uses of Macugen will be in combination with other treatments, like photodynamic therapy (PDT). A patient might receive PDT to seal off the blood vessels that are already leaking, and then an injection of Macugen to stop the blood vessels from growing. This "one two" punch could potentially save vision for many AMD patients.
Other antiangiogenic drugs are under development and we can expect to hear more about them in the coming year. Next month the results of the Phase III clinical trial for RETAANE will be announced by Alcon Laboratories. The Macular Degeneration Partnership will be reporting on that news from the American Academy of Ophthalmology Annual Conference.
For further information go to < www.amd.org >
Results of Age-related Eye Disease Study (AREDS)
25 October 2004
The report on the AREDS (Age related Eye Disease) Study on Nutrition & Dietary supplements was released on 25 October at the American Academy of Ophthalmology Conference.
VITAMIN SUPPLEMENT, AMD AND CATARACTS
On October 12, 2001, the National Eye Institute released the long awaited results of the AREDS (Age Related Eye Disease Study), designed to look at the effect of vitamin supplementation on AMD and cataracts. This multi year research project involved almost 5,000 individuals 55 80 years old. They were divided into four groups according to their eye condition (no AMD, early AMD, intermediate AMD, advanced AMD). In each group, participants were randomly selected to receive daily tablets of either zinc alone, antioxidants alone, a combination of zinc and antioxidants, or a placebo (so called sugar pill). About 90% of the participants remained in the study for five years.
The Encouraging Results
For people at high risk of developing advanced stages of AMD, use of the combination of antioxidants and zinc supplements reduced that risk by 25%. For this same group, the risk of vision loss itself was reduced by 19%. Study participants who had either no AMD or early AMD did not derive any apparent benefit from the supplements. The vitamins also did not appear to have an effect on the development of cataracts.
The Supplement
The combined antioxidant/zinc supplement used in the study contained:
* Vitamin C 500 milligrams
* Vitamin E 400 IU
* Beta Carotene 15 milligrams
* Zinc (as zinc oxide) 80 milligrams
* Copper (as cupric oxide) 2 milligrams
It is important to remember several things about supplements. You should talk to your doctor before embarking on any program of supplementation, especially if you have other medical conditions. Frederick Ferris, M.D., director of clinical research at the NEI and chairman of the AREDS stated, "For example, beta carotene has been shown to increase the risk of lung cancer among smokers," he said. "These people may want to discuss with their primary care doctor the best combination of supplements for them. With any supplements containing zinc, it is important to add appropriate amounts of copper to the diet to prevent copper deficiency." At the time of the study, lutein was not as widely recognized as a critical antioxidant for the eyes. It was not tested in this study, but has been shown to be important. Your diet should include at least five servings of fruits and vegetables a day to provide a balance of nutrients and antioxidants. Taking a vitamin supplement does not mean you shouldn't eat properly as well!
The Take Home Message
The best news is for people who already have intermediate or advanced AMD, since this population had the greatest response to the supplements. According to Paul A. Sieving, M.D., Ph.D., director of the American National Institute of Health NEI, "This is an exciting discovery because, for people at high risk for developing advanced AMD, these dietary supplements are the first effective treatment to slow the progression of the disease. The supplements are not a cure for AMD, nor will they restore vision already lost from the disease. But they will play a key role in helping people at high risk for developing AMD keep their vision."
Dr Ferris also noted that almost two thirds of the people in the study chose to take a daily multivitamin in addition to the assigned treatment. He notes that, "The AREDS also showed that, even with a daily multivitamin, people at high risk for developing advanced AMD can lower the risk of vision loss by adding a dietary supplement with the same high levels of antioxidants and zinc used in the study."
Bausch & Lomb, who provided the vitamins for the study, is already marketing a new eye formula based on these results. Other vitamin companies are sure to follow. You can also buy separate components of the supplement, like zinc, but be sure to check with your doctor before you do to make sure you are buying the right amount of each component.
For further information and answers to frequently asked questions take this to your doctor and ask him/her to check it out by going to :
http://www.amd.org/site/PageServer?pagename=AREDS
Coping
7 READY ANYTHING EASILY JUST POINT
From Premier Assistive Technology, 22 October 2004
Premier Assistive Technology unveiled its latest product at the Closing the
Gap Conference in Minneapolis, Minnesota, its new Talking Pointer. The
Talking Pointer has been integrated into the Universal Reader and Universal
Reader Plus products. The Talking Pointer will start to ship on November
1, 2004.
What makes this "talking pointer" technology so remarkable is its ability
to read almost anything on the screen. The user has the ability to control
how much or how little it reads. One of the most common barriers to
getting individuals to use assistive technology has often been the
complexity of products themselves. Many software companies just keep
adding more features to existing products in an effort to make them better,
but in reality they make the products more difficult to use, hence, they
often end up on the shelf collecting dust. It generally takes a user less
than five minutes to start using it proficiently. Just use your mouse,
point at anything on the screen and it reads it to you. This ease of use
makes it appealing to ALL age groups. It can be used by anyone from second
graders who can't read yet to a retired individual who has trouble reading.
You can now make the web come alive with voice. Just point at a link and
it will be read to you. Read a paragraph simply by pointing at it! Even
icons, field headings, virtually ANYTHING that you can point to with your
cursor on the screen can be read to you! In addition to the Talking
Pointer, the Universal Reader can be used to read documents, emails and
web pages. The words are highlighted as they are being read back to you.
It has a full set of options that let you pick a voice, reading speed, font
size and even foreground and background colors.
The Universal Reader suggested retail price is only US$39.95 and Universal
Reader Plus (with scanning) sells for US$79.95.
For More Information Contact:
Ken Grisham CEO, Premier Assistive Technology
Email: < info@readingmadeeasy.com >
URL: < www.readingmadeeasy.com >
EDITOR's NOTE : It is relatively cheap for a product that reads a screen aloud. If any member has checked this out, how about writing a letter to the Editor
and let us all know what you think of it and if it's really as good as it
sounds.
8 People
Tim Prendergast - A Golden Paralympic
Tim Prendergast, who we featured in our last newsletter is now settling down to work again as the Wellington Recreation Adviser of the RNZFB after having a month's holiday overseas with his Partner Lisa before returning home after the Athens Paralympics.
Unfortunately he lost a shoe not long after the start of the 1500 metres track race, which cost him a medal in that event.
But on the last day he clinched a Gold medal for New Zealand, timing everything perfectly to allow him to surge ahead of his rivals at the finish.
Photograph: Caption. Tim Prendergast after receiving his Gold Medal for winning the 800 metres track race in Athens at the Paralympics.
Tim said that he wishes to thank all those people who sent him messages of support, which inspired him to win.
Congratulations Tim, we are all proud of you.
9 Profile of Mary Dobbie
By Camille Guy
Thirty years ago Mary Dobbie retired at Piha, a small settlement out on Auckland's rugged west coast. Hers had been a busy and stimulating life. After completing a diploma in journalism at Auckland University in the 1930s and at the urging of friend Robin Hyde, Mary had accepted a job as lady editor on the weekly, the New Zealand Observer.
When printer Bob Lowry wandered into the offices one day and invited her to a meal with him and wife Irene, Mary was to find herself meeting all the left wingers of the time. For a while Mary herself belonged to the New Zealand Communist Party.
Photograph: Caption Mary Dobbie had a busy retirement mapped out but coping with sight loss is proving a challenge.
An early marriage had resulted in a daughter, and later Mary and husband Pat Dobbie, a radio announcer, had a further four daughters. Over the years Mary became caught up in social issues such as nutrition, family planning and the parent centre movement. Still an active member of the Historical Society, Mary has contributed to film documentaries and histories of these movements.
During the war Mary and Irene Lowry and their children shared a large rented house in Cornwall Park. Once their husbands returned from war service the two couples used to throw regular Saturday night parties. These were a social highlight for many Aucklanders and visitors to the house included such literary luminaries as Sargeson, Fairburn and Curnow.
In her sixties, Mary was able to satisfy her longing to live where there was a more rural aspect by making the move to Piha. It was not long before Mary's habits of journalism resurfaced and in 1982 she established the Piha Community News, a quarterly publication which continues to this day.
Mary has never been a driver, and by her late eighties the walk up the steep hill from the Piha store was getting tougher. Bowing to her family's concerns Mary made the move back to the city, relocating her computer and cartons of papers with a view to now writing a memoir of her life for her family.
But shortly afterwards Mary made a long postponed visit to the optometrist to see about new glasses. She had not needed reading glasses until in her mid sixties. So it was a shock to find herself referred to an ophthalmologist for investigation of wet macular degeneration.
This sight loss and Mary's increasing inability to read was a serious blow. One of her first acts on moving to an inland home not buffeted by coastal winds was to establish a flower and vegetable garden. Now she found herself pulling up carefully nurtured plants rather than weeds.
While Mary did have the advantage of good touch typing and familiarity with a computer, osteoporosis began to affect her fingers and typing has become impossible.
Now 91, Mary continues to live independently in her One Tree Hill unit, with its sunny terrace overlooking her garden. She is surrounded by books, not just the yellow plastic cased ones from the RNZFB library, but newly published histories and poetry collections. She intends to attend all three of the book launches she is invited to this month.
What is helping Mary most through this trying phase of life is her family and friends. Several volunteers read to her regularly, allowing her to read books that the Foundation is unlikely to record.
I ask Mary how she is coping with the new constraints on her life. "I don't think I've really come to grips with it. I put off doing the things I know I should do, I should tidy my place up, move the furniture around a bit. Somehow I think, oh well maybe tomorrow. "
That is a feeling only too familiar to the recently blind. Until more of us are computer literate and can access the equipment and software we need after sight loss, then adaptation will never be easy. But watching Mary Dobbie go about her still active and stimulating life is indeed an inspiration.
Branch News
From Camille Guy
About 30 members and several Foundation staff attended a meeting held at the RNZFB on Sunday afternoon, 31st October. Besides the two Auckland executive members, Camille Guy and Fraser Alexander, Kaye Newton and Elizabeth East were also able to attend. Auckland Ophthalmologist Dr Rachel Barnes spoke on recent research on diagnosis and treatment of retinal disorders and answered questions. Afternoon tea was served and members mingled. Two new members were recruited.
Letter
FROM : Don Jeffery, Learning Design Centre
Open Polytechnic of NZ, Lower Hutt
Email: Don.Jeffery@openpolytechnic.ac.nz
First may I say how much I enjoy reading the articles in the Retina News and the clear structure of the journal.
Now to the reason for my letter. Three years ago I was diagnosed with a melanoma on the choroid of my right eye. I had radiation therapy at Christchurch Hospital with a radio active plaque attached to the back of my eye for 5 1/2 days. It was a relatively painless procedure and the long term prognosis is good but there has been some deterioration in the vision from my right eye due to the tumour being close to the optic nerve.
I would be interested in sharing my experiences and supporting data with other people who have had a similar eye affliction, with the aim of setting up a support group. I can be contacted at 38 Settlement Road, Te Horo, RD1 Otaki, phone 06 364 2419.
Notice
National Deafblind Camp for all ages in March 2005
If you have both vision and hearing loss, you are welcome to attend the camp being held near Tongariro National Park from March 18 21, 2005.
For more information contact:
Richelle Frantz, RNZFB Deafblind Services, Email:
< rfrantz@rnzfb.org.nz > or
Phone: 0274 372 685 or 03 375 4302.