Funds to Fight Irlen Syndrome
MAJOR UPDATE #1 (Thursday 8th November 2012)
We have now reached our initial $800 goal. This should adequately cover all testing and treatments outlined below. However, it is still more than worth your while to donate. We are now hoping to reach $1000. The extra $200 should cover all campaign and miscellaneous costs, as follows:
- Indiegogo fees (4% of total)
- PayPal Fees (processing and currency conversion to £GBP)
- Wire fee for credit card donations (one-off payment of $25 (possibly a second $25 fee to receive the 5% rebate on fees for reaching our goal))
- Travel to and from the necessary Irlen centres and locations for the tests and treatment (we rely on public transport)
Therefore, any further donations and awareness spreading are welcomed greatly. They will cover all of the above misc costs and will ensure that we have enough for our cause without a shadow of a doubt. There's still over a month to go! Thank you.
My name is Clive. I created this campaign for my best friend, Robyn, who I have known for several years. Robyn suffers from a condition known as Scotopic Sensitivity Syndrome, or, more commonly, Irlen Syndrome.
This condition affects 12-15% of the UK population. Despite this, many people do not know about this visual-perceptual difficulty, including even those who suffer from it. Many people who have the problem do not realise it - they regard the way they see print and the world as "normal". As such, one of the goals of this campaign is to spread awareness of the existence, symptoms, and treatments for Irlen Syndrome - more information on this matter is available below.
The main goal of this campaign, however, is to raise the funds that Robyn desperately needs in order to have the necessary tests performed to identify the exact nature of her unique condition, and, following that, treat it. Please read on for information on how you can help spread the word, and how your funding can help return the life of a truly inspiring individual to normal.
So, what exactly is Irlen Syndrome? What are the symptoms, and why does it effect Robyn so badly?
The following paragraphs of general information are taken from the following websites, which are very informative additional reading material:
Please note that the above websites are not affiliated this personal campaign in any way.
Irlen Syndrome is a specific type of perceptual problem that affects the way the brain processes visual information. It is not an optical problem. For those with Irlen Syndrome, the brain is unable to process full spectral light. This results in:
- a range of distortions in the environment.
- a range of distortions on the printed page.
- physical and behavioural symptoms.
It is exacerbated by environmental factors such as lighting, brightness, glare, high contrast, patterns and colours. Irlen Syndrome affects people of all ages.
Irlen Syndrome has a wide range of symptoms which may vary from person to person. These symptoms may be first noticed in childhood but affect people throughout their lives. These symptoms are effectively dealt with by the use of Irlen® Filters, worn as glasses or contact lenses, following a thorough assessment and colour evaluation by a trained Irlen Diagnostician.
Studies have shown that 12-15% of the population are affected by Irlen Syndrome. However, it is largely undiagnosed because:
- it is not an obvious problem.
- it is not identified by standard visual and medical examinations or by educational and psychological assessments.
- sufferers think that the perceptual distortions that they experience are "normal". They assume that everyone else perceives the page and the environment as they do and also experience the same physical discomfort.
So, what exactly are these symptoms?
• Strain working under bright lighting
• Difficulty finding comfortable lighting
• Poor concentration
• Lack of attention
• Strain working at a computer
• Glare from bright objects
• Eye strain
• Headaches from:- reading, computers, lighting, TV, supermarkets
• Poor comprehension
• Skips words or lines
• Reads slowly or hesitantly
• Loses place
• Takes frequent breaks
• Avoids reading
• Eye strain
• Accident prone
• Bumps into things
• Difficulty catching small balls
• Difficulty with number columns
• Difficult reading music
• Difficulty writing on a line
• Unequal spacing when writing
Now, Robyn herself suffers from all of the symptoms listed above to some degree. Some are worse than others. However, all of these symptoms have been of increasing severity as of late, which is the reason why I was inspired to make this push in the first place. Now, here is the main problem:
Robyn is in full-time education. She decided to go back to college last year in a brave attempt to follow her dream of working with animals. She is now in her second year of a full-time course; a Level 3 Extended Diploma in Animal Management at Reaseheath College. As you can imagine, this course involves completing a whole lot of written and word-processed assignments.
Back when she first returned to education, her symptoms were no worse than they had been throughout the rest of her life, and, as previously mentioned, nobody suspected anything was abnormal because of this. However, when they worsened considerably as of late, Robyn went through a long chain of doctors, hospitals, and opticians in order to try to get to the bottom of her problem. And thus we arrived at the only possible conclusion: Irlen Syndrome.
Getting to the point, then: Robyn finds it near impossible to read text. Printed, or on a screen. Her assignments have very tight deadlines. If she misses any, her qualification is in serious jeapordy, and she will end up back where she started. Robyn absolutely adores working with her animals, and greatly enjoys her course. But no matter how much she wants to, and how eager she is, she simply cannot bring herself to work for more than a few minutes at a time due to her condition, as it causes her serious headaches and stress as the words she is trying to read and write begin to move and swirl around in front of her eyes, overlapping and floating completely off the page. I personally don't feel as though there are words powerful enough to explain how horrible that must feel. She often ends up literally in tears because all she wants to do is learn.
Perhaps the only saving grace, then, is that the condition luckily does not in any way hamper her ability to draw - her favourite lifelong hobby. Drawing has always felt natural to her. After all, she was never able to read properly. What should I get her for Christmas this year? A book? A Kindle? As much as I would love to, that is simply out of the question. Can you yourself imagine not being able to read despite being perfectly literate? It is now at the stage where I often find myself having to read various college notes to Robyn, and type as she dictates to me.
Your generous donations will not only ensure that Robyn can lead a normal life like you and I, but will give her the future that she has been working so hard to achieve for so long.
What We Need & Why
Identifying and treating Irlen Syndrome is expensive. There are only a handful of specialist Irlen Centres throughout the country, and these are usually the only places able to provide people like Robyn with the necessary tests and treatments, such as tinted glasses and overlays. Such items are not covered by the NHS. Although we are certain that Robyn has Irlen Syndrome, the full screening procedures are necessary to identify the exact nature of her condition. A brief breakdown of the procedures and costs is as follows:
Stage 1 - Screening: Testing for Irlen Syndrome and identifying the specific requirements of the individual is a 2-step process. The first step is the initial screening and assessment to determine whether the individual in question can be helped by colour. This costs between £70 and £85.
Stage 2 - In-depth Evaluation: This involves an in-depth assessment and colour evaluation, to determine the full array of symptoms and potential remedies. This costs £168 + VAT.
Filters: The filters decided upon in Stage 2 cost £108, plus an administration fee of £15 + VAT. There is also a £90 lab fee on top of this, to cover the cost of tinting the glasses with the colour most appropriate for the patient. A special filter may also be necessary, which will cost slightly more. Finally, since Robyn does not wear optical specs under normal circumstances, she will also need to pay for frames.
Total: All of the above comes to £466, before VAT and before considering potential extras such as the frames and specialist filter. This equates roughly to $750 US dollars, which is the total we are aiming for to ensure that Robyn can receive everything she needs. Our goal is $800 in order to cover transaction and conversion fees.
Due to our current financial situation, there is unfortunately not much we can offer our contributors in the way of perks. However, we will ensure that everyone is individually thanked in the most appropriate method, as your generosity really does mean an awful lot to us and will massively impact Robyn's life - see below for details.
If our goal is not reached, all donated funds will go towards getting Robyn as close to her treatment as possible - for example, getting the tests done so that she can at least rest easy knowing what the next steps are.
On the other hand, surplus funds will go towards ensuring the VAT and other additional costs are completely covered.
Thank you very much indeed for taking the time to read our story. Even if you are unable to contribute for whatever reason, your interest is much appreciated, and you can still be of great help to our cause.
I ask that you please do all you can to spread the word of Robyn's campaign, and of Irlen Syndrome in general. Sharing the links above is a great starting point!
There are a whole host of share tools available right here on Indiegogo - please use them! Facebook, Twitter, e-mail, forums, even everyday conversation. Please do your part to spread the word, and together, we can truly make a difference.