TheBlindJournalist: Seable Disabled Holidays - Active Accessible Holidays

Seable Disabled Holidays – Accessible Active Holidays.

TheBlindJournalist reports from Sicily.

In 2011 an Italian man set up an organisation which would go on to change the lives of all its users.
Damiano La Rocca, 29, from Catanya, Italy came up with the idea to provide accessible active holidays, to those with physical or sensorial disabilities, because he wanted to fulfil a life-long dream.

Damiano said:
“My Dad is a scuba-diving instructor. He taught me that in life, you have to accept the challenge. It was that sentiment that drove me to set up Seable Disabled Holidays. Seable is an award winning social enterprise organising accessible and active holidays for individuals, couples, families and small groups. We enable people with limited mobility, impaired vision or deafness to easily participate in life-changing experiences through sporting, cultural and gastronomic activities in new and interesting destinations.
Our holidays are tailored for each person and we guarantee a stress-free booking process while providing local knowledge that you need in order to enjoy the holiday to the fullest.”

Rosie Johnston, 27, a blind lady from Epson, London said:
“I thoroughly enjoyed my holiday in Sicily. It was a fantastic experience. The Seable staff were very helpful, friendly and informative. I will definitely go on a holiday with Seable again and highly recommend them.”

One of Damiano’s visions was to work with various organisations.
Damiano furthered:
“We collaborate with local and international charities to guarantee the maximum level of knowledge and experience. Our partners, aim to make a difference in the world by catering exclusively for people with disabilities. “

One charity that Seable work with on a regular base is VICTA, who are based in Milton Keens, England.
Mohammed Salim Patel, 21, a blind man From Blackburn, Lancashire said:
“I cannot put into words how good the service is provided by Seable Disabled Holidays. I went to Sicily with them, and VICTA, in October 2015 and I was extremely satisfied with the five star service that was provided. Damiano and his staff ensured I was completely comfortable at all times. Damiano went out of his way on many occasions to help me and meet my requirements. Seable Disabled Holidays are always prepared to Taylor your holiday to suit you and your needs. All the staff are very friendly and understanding. You do not feel as if you're disabled because they make sure you are treated as normal and that you get to do what you want. They will fulfil any dietary or religious requirements you have and do everything in their power to make sure you have the best time with no stress. I recommend Seable Disabled Holidays highly. Every excursion that is offered is worth every penny and provides the most authentic experience possible that you wouldn’t get through any other travel agency or tour operator.”

Although Seable has only been running for a few years, the organisation has achieved a lot. Seable has a portfolio of achievement that includes two Guinness World Records. Both were in deep-sea diving. The first was in 2007 when a Paraplegic man reached 59 metres underwater. The second was in 2009 when a blind girl reached 41 metres underwater.

On this topic, Damiano said:
“Our aim is to improve confidence and skills for life, challenging perceptions of disabilities and blindness. Our emphasis is always on high quality, multi-sensory experiences.”

Aside from scuba-diving, 4x4 off road driving, going to the top of Europe’s highest active volcano; Mount Etna, Mediterranean olive oil making  and tactile museum visits; Seable have a whole list of activities they offer, all of which are completely accessible and competitively priced.

To find out more about Seable Disabled Holidays, visit their website on:
http://seable.co.uk/

For more information about VICTA and what they provide, visit:
http://www.victa.org.uk/

To learn more about, and view more work of TheBlindJournalist, visit:
http://theblindjournalist.blogspot.co.uk/

TheBlindJournalist: David Townley Twenty20 Memorial Cup Report

BCEW David Townley Memorial Twenty20 Cup Finals Day Report.

 

TheBlindJournalistreports from London.

 

It has been a record breaking and history making season this year for the Lancashire Lions and they added to their landmarks when Captain Sheraz Chohan led his side to the Twenty20 Finals Day, for the first time in the club's history, after they beat a BCEW side on 1st August.

 

The Finals Day took place in Highgate, London on Saturday 19th September. Four teams had reached this stage; the Lancashire Lions, Sussex Sharks, London Metro and the Warwickshire Bears.

 

As Captain Sheraz Chohan went up for the draw, his players eagerly awaited the result to find out who they would be playing in the semi-finals. The outcome was that Lancashire would face league champions Warwickshire.

 

The match toss was won by the Lions who bowled first. Usman Afridi opened the bowling to Justin Hollingsworth. However, he was no challenge for the Lions as he was caught out by Wasim Afridi off Usman Afridi's bowling. Warwickshire's other key batsman, Luke Sugg, was also no threat to Lancashire as he was caught and bowled by Mohammed Janaid. The Lions had control of the innings from start to finish.

 

Warwickshire, who usually obliterate teams by putting up scores that can't be reached, were stuck between a rock and a hard place because of Lancashire's dominance throughout. The plan and tactics of Captain Sheraz proved to be downfall of one of the best batting partnerships in the blind cricket world. 

 

At the end of the first innings Warwickshire could only manage to put 133/5 on the scoreboard. Amjad Khan, Sheraz Chohan and Arslan Sabir all bowled very well which cocooned the Bears because they couldn't hit out.

 

Following a galvanising speech from the Captain, Usman and Wasim Afridi came out to bat. They both combined well until Usman Afridi was run out with 60 on the board. However, Wasim stepped up to the mark and combined with George Ferguson to see the game off in 16 overs. The Lions won by eight wickets.

 

This victory saw the Lancashire Lions through to the final but this result in itself was a massive achievement for the Lions as Warwickshire were the only team they hadn't beaten this season. Warwickshire were no match for the excellent performance by every player in the Lions team.

 

Sussex were the winners of their semi-final against London Metro which meant it was a Sharks V Lions Final.

 

Sussex won the toss and sent Lancashire into bat. Usman and Wasim Afridi opened the batting. Sussex were an excellent fielding side and took many catches and opportunities. Their ground fielding was superb. Usman Afridi made 41 before he was caught out. George Ferguson and Sheraz Chohan then came up to balance the game. Captain Sheraz anchored his innings and did his job superbly to keep George on strike, who was on fire. They both combined for a 40 plus partnership. George made 63 off the bat. The Lions totalled 149/7.

 

After a quick break Lancashire came out to bowl. Captain Sheraz Chohan's bowling sent shivers down the spine of Sussex Captain, Si Legwith. Si was caught out off Sheraz's bowling with 11 runs to his name. Sheraz bowled very well in this game also. His figures were three overs for 20 runs and two wickets. Arslan Sabir also made a name for himself as his bowling was economical and very fast. His figures were 3 overs for 10 runs.

 

Amjad Khan caught out Sussex's Ian Morris with a superb catch. Sussex kept chipping away at the score but Lancashire also kept fighting and took the final to the last over. The pressure fell on Mohammed Salim Patel to bowl the final over. Sussex needed 7 runs of 6 bowls. Salim said "I was flapping like a fish out of water" but he bowled very well and took the game to the last bowl.

 

Sussex managed to reach their target and lifted the trophy. The Lions had made history for themselves as they'd reached the final for the first time and managed to take their opponents to the very last bowl.  Credit to Lancashire's Captain and every player that played a part in getting Lancashire to where they were.

 

As well as Lancashire's Development team winning the Brian Johnston Memorial Trust Development Festival and being the runners up in the Development League, the club's successes didn't stop there. The National side had also made leaps of their own. They finished second in the National League, their highest position since the club's inception three years ago. They also reached the semi-finals of the British Blind Sport Primary Club Heindrich Swanepoel Memorial Cup by beating, the then, cup holders Sussex Sharks. To top it all off, and end the season on an even bigger high, Lancashire's Twenty20 side reached the final of the cup and took it to the last bowl of the match but only just lost to the Sussex Sharks.

 

There were also many personal achievements for a lot of the players:
Usman Afridi won the "Best Partial Batsman Of The Year Award" for making over 900 runs off the bat.

 

Wasim Afridi won the "Most Promising Player Of The Year Award"

 

Sheraz Chohan won the "Best Low Partial Player Of The Year Award" Sheraz also was the Captain for both cups which the Lions had entered.

 

Martin Robson won the "Best Total Bowler Of The Year Award" for taking 10 wickets. Martin was also Captain of the National side which finished second.

 

Amanda Large was also a nominee for the Female Player Of The Season Award.

 

There were a few fresh faces this season also but every debutant played their part in each and every game they played.

 

So, overall it has been an exceptional year in every aspect for the Lions, who will now have a break before they commence winter training in preparation for next season.

TheBlindJournalist: Brian Johnston Memorial Trust Development Festival Report

Brian Johnston Memorial Trust Development Festival Report.


TheBlindJournalistreports from Leicester.


This report is sponsored by Performance Fluids Limited.


It was a very early start for the players on Saturday morning as they travelled to Leicester to play in the anual BJMT Development Weekend. However, they did not show their fatigue as they got stuck into their first match. This was prior to a very motivating and mature Captain's speech by 18 year-old, Tahseen Sabir.


The Lancashire side consisted of two debutants to the game in the form of youngster Aman Raja and Ayaz Ali. The side also had 5 players who had never played in the Development Festival before.
Lancashire's first match was against the Gloucestershire Growlers. Lancashire won the toss and bowled first. Young star Usman Afridi opened the bowling and went on to take two wickets. Wasim Afridi also caused two death rattles. The Growlers managed 63 for 6.


Amelia Robertson and Michael Dickson combined to chase this score down and both ran very well to achieve their target to win the first match for Lancashire.


The Lions second fixture was against the Dorset Dolphins. The toss was won by Dorset who chose to bowl first. The Lions were eager to get going as they had the momentum from their last victory. Arslan Sabir and Michael Dickson opened the batting. Tahseen Sabir, Michael Dickson and Wasim Afridi all made 25 not out. Mohammed Salim Patel added to the score by hitting 14 off the bat, his highest score yet. Lancashire made 127 for 4.


When it came to bowling, Amjad Khan got two wickets. Ayaz Ali also took a key wicket, removing a top order batsmen. Amelia Robertson showed her agility and skill as she took on the role of wicket keeper. The youngster did a great job. The final result being 57 for 3, rendering another victory for the Lions.


The third match of the day was the Lancashire Lions Vs the Barkshire Stags. The Stags won the toss and put the Lions into bat first.


Tahseen Sabir and Kieran Kelly opened the batting. The Captain hit some elegant shots and retired after making 25 not out. Wasim Afridi also did the same by smashing a quick firing 27 not out. The Lions made 106 for 5.


When it came to the bowling Arslan Sabir, Wasim Afridi and Usman Afridi all took wickets. Lancashire won by 89 runs.


As the Lions moved to pitch 1 for their final match of the day, they were fired up to stay unbeaten and did exactly that. The match was against Surrey VICC who won the toss and batted first. Usman Afridi opened the bowling for the Lions. Surrey were bowled out for 49. Usman Afridi and Amelia Robertson both took wickets. Tahseen Sabir and Aman Raja opened the batting. Debutant Aman played exceptionally well for his first ever batting appearance and made 7 runs off the bat. Tahseen Sabir helped clinch the victory with another 25 not out.


The Lions showed their dominance by winning all four of their matches with ease and confidence.


On Sunday the Lancashire Lions faced the Kent Spitfires. The toss was won by the Lions who batted first.


As soon as Wasim Afridi picked up his bat it was as if he hadn't slept. The youngster continued his form from the previous day by hitting several death touches off the bat to make 25 not out. Lancashire made 102 for 2.


Captain Tahseen Sabir gathered his players around and after a quick speech the Lions roared and headed out for part two of the innings.


Arslan Sabir opened the bowling for the Lions and went on to take a wicket. Usman Afridi and Tahseen Sabir also did the same. Arslan Sabir played extremely well in this match. Arslan stopped several boundaries with some sublime fielding.


Kent could only manage 53 runs which meant Lancashire had won their fifth consecutive match. This match was played in great spirits between both sides. This victory took the Lancashire Lions through to the Final of the BJMT Festival.


After lunch the Lions came out to play in the final. There opponents were the Barkshire Stags.


The toss was won by Barkshire who put the Lions into bat. Arslan Sabir and Usman Afridi opened the batting. Both retired with 25 not out. Mohammed Salim Patel then came in and hit 10 off the bat, totalling 40 for him throughout the weekend. In the final over Amjad Khan and Aman Raja combined for a 35 runs partnership which resulted in the Lions making 145 for 5.


Wasim Afridi was the opener for the bowling. Usman Afridi took two wickets, one of which was a great caught and bowl that got rid of a key batsmen for the Stags. Captain Tahseen Sabir also took two wickets. Amjad Khan and Mohammed Salim Patel weren't shy to take wickets of their own and got one each. Salim also took a great catch. Every player for the Lions stepped up to the mark. Youngsters Amelia Robertson and Michael Dickson also bowled economical overs and Kieran Kelly did the same. The Stags could only manage 77 for 7 which meant the mighty Lancashire Lions were winners of the Brian Johnston Memorial Trust 2015 Development Festival. An all round excellent performance by every player throughout the weekend in every game. Usman Afridi and Mohammed Salim Patel were both strong contenders for Man Of The Match in the final. Not forgetting Coach and Mentor Sheraz Chohan who worked tirelessly before the festival to get all his players down. Sheraz was the glue of the team as he was on the sidelines of every match shouting encouragement and praise throughout each game. His advice and support meant that every player was galvanised. This victory is dedicated to him.


As the festival drew to a close the Lions accepted their winners medals and gave their final roar before heading back home.

TheBlindJournalist: Blind Cricket Match Report

Saturday 29th August 2015 Match Report, Lancashire Lions Vs Somerset VICC
TheBlindJournalistreports from Manchester.
Sponsored by SoundSphere Magazine.
On a day where the Red Rose recorded a historic Twenty20 cup triumph, the Lions weren’t going to be missing out on creating their own piece of history as they hosted Somerset VICC in the BCEW National League at Our Lady’s High School.

Somerset won the toss and put Lancashire into bat first. With opener Usman Afridi already having set new club records by knoching up his maiden centuries in back to back matches in the BBS cup 133 not out  against Sussex and 171 against league champions Warwickshire. Another high score seemed imminent but what unfolded throughout the course of the day will likely never be repeated in blind cricket on these shores again.

Usman wasted no time as he took control of the innings by dispatching the first over for 21 runs and soon bringing up the 50 run partnership with Sheraz Chohan, the latter departing cheaply. Usman continued to smash the bowling all around the ground without taking any risks in the process, bringing up his third century in another productive partnership with Captain Martin Robson. The drinks break brought no restbite as Wasim Afridi joined Usman in the 14th over. Wasim immediately got himself into the groove with some elegant looking drives and death touches to send the ball to the boundaries.  With the field ran ragged Usman brought up his double century and took the total over 300 whilst Wasim reached his half century in no time.

With continued excitement from the bench as the team surpassed their previous best highest team scores of 272 and then 321 and as information started to be relayed of runs needed to break both the individual and team highest scores, new records looked in sight.

It was time to stand and deliver as Usman brought up his 250 with his first six of the innings with some phenomenal batting with pin point dissecting of the field as he took the run rate over 15 by taking the final 5 overs at almost 20 an over.

In the 27th over Usman Afridi became a record breaker as he finished on 283 not out off just a 127 balls in which he hit 41 4’s and a six to set a new British Record for the highest individual score and in the process posting the highest domestic team total of 427-2 declared, with Wasim Afridi contributing 67 runs in an unbeaten partnership of 237 for the third wicket.

Usman demonstrated the kind of skill, understanding and maturity that is shown by experienced international cricketers in the top echelons. Since making his debut in 2013 along with Wasim for the development side, it wasn’t going to be long before they both made their first team debuts and surely the Lions couldn’t have asked for a better first season from the pair this year.

The tea break provided some restbite but the task ahead of under strength Somerset became even more daunting when Muhammed Janaid, the left arm fast prolific bowler removed the top order to finish with 3 wickets, alongside Captain Martin who took two wickets. The first being a stunning low catch by Tahseen Sabir who dived across the pitch to take the ball inches from the ground. Sheraz continued to chip in with another wicket as he clean bowled a defensive middle order batsmen. Tahseen claimed another catch as he sharply moved to take a deflection of Martin’s head and then forced the final batsmen to chop on and help skittle Somerset all out for just 46 in the 14th over to hand the Lions a record winning margin of 381 runs.

This victory leaves the Lancashire Lions a draw away in the final game against Sussex to guarantee a second place finish in the National League with a Twenty20 finals day to look forward to on the 19th September.
 

TheBlindJournalist: Press Release, Lancashire Lions Get A New Sponsor

THE LANCASHIRE LIONS WELCOME IN A NEW SPONSOR

TheBlindJournalist reports from Manchester. 

Lancashire Lions Visually Impaired Sports Club are very pleased to announce their new sponsor, Soundsphere Magazine. Editor and Founder of the magazine, Dominic Smith has provided the club with a very generous £200 to help the club succeed and ensure the young talent coming through have the opportunities to play cricket: socialise and travel in order for them to gain confidence, self-esteem and to live an active and happy life. 

Soundsphere magazine is an alternative music, arts and culture publication based in the North of England, working with local, national and international artists across various genres including, electronica, rock, metal and indie. Of the publication's creation back in 2008, Editor, Dom Smith comments: "For me, it was about doing something different; I wanted to give opportunities to bands and writers from up North, a chance to gain some great exposure, and we've been on some incredible adventures around the world with it so far. He adds: "We love working with charities, and supporting great causes as well. It's very important in life to take as many opportunities as possible, whether that's interviewing amazing bands, working with students and young people to workshop journalism skills, or supporting great people, to do great things with an awesome team of people."

Mohammed Salim Patel, Club Press Officer for the Lions said: 

"As a club we are very grateful for the sponsorship that has been provided. Help from individuals like Dom Smith helps us to carry on our work and fulfil our ambitions towards the visually impaired communities in the North West. On behalf of all the committee and members of the Lancashire Lions, a heartfelt thank you." 

To find out more about Soundsphere Magazine, visit http://www.soundspheremag.com/

To learn more about the Lancashire Lions visit the club's website on http://llvisc.org/

If you would like to sponsor the Lions, please do not hesitate to get in touch with Club Secretary, Sheraz Chohan on 07581 351786 or email Club Press Officer, Mohammed Salim Patel on theblindjournalist@gmail.com

TheBlindJournalist: Inspirational Speech at the Careers In Journalism and Media Careers Fair (CJAM(

TheBlindJournalist: Blind Cricket

The game of cricket is perhaps the ultimate test of hand-eye co-ordination. Not the most obvious activity for the visually impaired, but the game of blind cricket is a much loved and highly competitive activity across the world.

 

TheBlindjOURNALISt, Mohammed Salim Patel gives an overview of how visually impaired cricket is played but also an insight into one of the UK’s leading and ever expanding clubs, the Lancashire Lions.

 

Based in Manchester, North West England, the Lancashire Lions Visually Impaired Cricket Club was established in 2011. The club burst on to the scenes by winning the Northern Development League, in their first season, with a 100% record, beating well-established teams such as Durham and Yorkshire to name a few. More on the club below.

 

The game of V.I cricket only has a handful of adaptations in comparison to the mainstream sport. There are four totally blind players in a team and 7 partially sighted individuals, to make 11, which is the same as normal cricket. Each player is given a classification based on their level of sight, ranging from ‘B1’ to ‘B4’. A B1 player is totally blind and as the numbers go up the players sight increases, so a B4 player would have the strongest sight in a team.

 

The ball that is used is a size 3 football that has bells inside it so that the totally blind players can hear the ball and the partially sighted players can see it because it is bigger. When a B1 is bowling the wicket-keeper claps at either off or middle stump so the player can gage the direction in which they need to throw the ball. If a B1 is batting then the ball would have to bounce twice before it reaches the batsmen otherwise it would be classed as a no ball. A B1 batsmen would also get a runner and their runs are always doubled. Lastly, when it comes to fielding all the B1 players can catch the ball off one bounce which would be classed as out. Besides these adaptations all the same rules apply as to normal cricket.

 

The Lancashire Lions are currently partway through the 2015 season. They have a team for both the Development League and National League. The treasurer is Ben Tanner. Chairman is Amjad Khan and the Club Secretary is Sheraz Chohan. The club also has Dr Amanda Large as its welfare officer and Mohammed Salim Patel as their press officer.

 

Sheraz Chohan, Club Secretary and first team player, from Manchester said:

“My love for cricket is thanks to my father. He cricketed me out from a very young age. My father himself is totally blind so he would ask me to read out the runs to him off the TV screen.”

 

The reason for Lancashire Lions being formed was because there was no competitive cricket in the Lancashire county, enthusiasts would need to travel to places such as Durham or Yorkshire to play competitively. This galvanised Sheraz to set up what is now LLVICC.

 

“With Lancashire being such a successful cricketing county it seemed wrong for the county not to have its own competitive blind cricket team” furthered Chohan.

 

The club is ever expanding and has now started to delve into multi-sports such as blind ten-pin bowling, goalball, yoga for the visually impaired and soon V.I table tennis.

 

Lancashire Lions Visually Impaired Cricket Club is a pioneering and multi-cultural organisation creating sporting and social opportunities for both males and females who have a visual impairment. For further information do not hesitate to call Sheraz Chohan, Club Secretary on 07581351786 or email the club’s press officer Mohammed Salim Patel on theblindjournalist@gmail.com

 

Follow the Lancashire Lions on Facebook:

https://www.facebook.com/pages/Lancashire-Lions-Visually-Impaired-Cricket-Club/251655981655840

Twitter Handle: @lancslionsvicc

Website: llvisc.org

TheBlindJournalist: Excellence In Journalism Award

TheBlindJournalist: An Insight Into Retinitis Pigmentosa RP Radio Documentary

Transcript for ‘An Insight Into Retinitis Pigmentosa’

Sufferers Clips. RW At night time when I’d go to bed I would get butterflies and think how am I going to cope, SG Sitting on the steps at the cinema instead of sitting on the seat, CS I went through a period of depression 9 secs > Going blind, that’s what they’re talking about. I know how they feel. We all suffer from Retinitis Pigmentosa. It’s one of the world’s most debilitating eye conditions. > SFX Typing on a keyboard > My name’s Mohammed Salim Patel. I blog as ‘TheBlindJournalist’ and in this radio documentary I’m going to give an insight into this condition, which affects 3.5 million across the world. But what is Retinitis Pigmentosa or RP as it’s more widely known? Genetic Counsellor Georgina Hall, from the Manchester Centre for Genomic Medicine > GH Retinitis Pigmentosa is actually a group of conditions. They’re inherited conditions that cause a deterioration of the Retina, which is the light sensitive film at the back of the eye. Amongst that group there are many different types; so some come on from birth, others come on later in life. Most of them, but not all of them, progress with time so that individuals with Retinitis Pigmentosa have gradual vision loss, which can vary from one group of genes to the other. So some can have more problems with their peripheral vision and their night vision. Others can have difficulties with central vision and reading and recognising faces.   30 secs > DP 1 SFX Car window close > I’m at the Royal Blackburn Hospital. It’s a dismal Friday morning. I’m here to meet Consultant Ophthalmologist Dr Anaswami V J Kumar. I was diagnosed with RP at the age of three. My younger sister; Nadia has inherited it too. RP is unique because the rate of progression is never the same. I’ve found this with Nadia as I’ve lost my sight a lot quicker than her. This isn’t uncommon but why? > SFX open and close car door > VJK Varied Why’s it varied? It’s because of the amount of rods and cones affected in a particular individual. There are millions of rods and cones in the Retina. The cells are described as photoreceptors. Now, essentially in Retinitis Pigmentosa these cells start to die and the reason why it varies from person to person is the extent of damage to these cells. It all depends on how many cells have been damaged so in Retinitis Pigmentosa the first cells to die are the rods and rods are situated in the peripheral part of the Retina outside the breaches of the Retina and hence you find that it affects peripheral vision first. The central part of the Retina, the cones, are situated mainly in the central Retina. So that is the one which is affected last. > Having this condition means that it affects all aspects of sufferers lives. Especially when it comes to socialising because RP has many symptoms. Tunnelled vision is one of them.  > VJK Most of the patients with Retinitis Pigmentosa you will find that they retain good vision. In other words when they read the test chart at the opticians they’ll be able to read quite a lot of letters down the line. But they will have to do a searching moment because they have a kind of tunnelled vision. They can see the letters but they’re looking through like a tube 1min 9 secs > DP 2 Ruth Walmsley has RP. When we met tunnelled vision meant that there was an awkward moment. I couldn’t see if Ruth had extended her hand for me to shake it. Tunnelled vision means that I can only focus on one element at a time. Ruth’s 52, and was diagnosed in 1991 > RW 1 I’ve remembered the year because it was the year that I’d had my daughter and she was three months old when I was actually diagnosed. I’d got a two year old girl as well, so I’d got two daughters and it was quite a shock because there’s nobody else in the family that have got it. So it completely came out the blue. Initially I suppose I was a little bit worried and frightened you know at night time when I’d go to bed I’d get butterflies and think how am I going to cope. But with having two young children to look after you can’t sort of sit and dwell on things too long. You still got to get the routine, they still needed to be get up and dressed and have their food. So the fact that I had a young family to look after really made it that I wasn’t focusing too much on the fact that I was going to lose my sight. > Many would think that going blind means life comes to a standstill but Ruth didn’t let it. She’s raised a family and works part time in a bank > RW V2 Now I’ve got no sight at all, I’ve just got light perception, the fear of what it would be with no sight is a lot worse was a lot worse than actually living and managing with no sight because it’s not been as bad as I thought it would’ve been. it’s a lot to handle, and I’m not saying it doesn’t have a big impact on your life, because it does, but it is manageable and with the right support and understanding from people around you can still have a really good happy life 1 min 21 secs > Growing up I had a good amount of vision but in my late teens my sight started to go rapidly. The possibility of going blind does scare me but I try not to think about it. I will just have to accept it like Ruth did and focus on my ambition to be a broadcast journalist. My disability makes me who I am. > SFX Phone ringing “Hello RP Fighting Blindness, how can I help? > RP Fighting Blindness is the only specific charity for the condition. At the time of this interview David Head was the chief executive of the organisation. > DH 1 The organisation was formed, nearly 40 years ago, in 1976. Long before my time. But our founder a lady called Linda Canter, she was diagnosed with RP and was quite upset at the time about the lack of information that was available about the fact that there was no cure or treatment. Also about the way she was treated when she was diagnosed. So, very much a case of being told that she was going to lose her sight and that there was nothing that could be done, all very blunt. Linda is not the sort of person to let things like that happen to her. So she got together a number of patients and a few scientists with an interest and was determined to change things and that was how we started. So it’s a patient driven, a patient initiated organisation 45 secs > RP Fighting Blindness isn’t just a UK organisation. It has links abroad too > DH 2 We are a member of an organisation called Retina International and Retina International pulls together organisations like this one from about 40 countries around the world and the idea is to encourage dialogue to make sure that scientists are communicating well with patients around the world and if we can to influence the direction of some of the research and to try and encourage the scientists to collaborate around the world and to avoid duplication. So, we have quite a bit of respect internationally and a little bit of influence but primarily we’re a UK organisation 39 secs > As Retinitis Pigmentosa affects 2-3.5 million people across the world. It’s understandable that people look to the leading countries in medicine for cures and treatments. > Fade in CS 2 coming to London my father had a hope that it would be diagnosed and there will be a cure for it fade out and fade in link > As did the parents of Chandni Sony… Chandni is a 32-year old qualified accountant and was diagnosed when she came to the UK from India in 1997. The condition affected her a lot. She’s behind with her education by two years Chandni also went through a period of depression > CS 1 My vision was quite bad as a child anyway so we knew that I had problems with my eyesight but early on I could see much better but over the years I’ve lost my sight quite massively 12 secs > This condition is not only life changing for its sufferers. Their families are also affected hugely > DH 3 One of the groups that needs the most support when it comes to information and emotional support sometimes are the parents of children that are diagnosed who face a horrendous and we have more calls on our helpline from people in that situation than people who are affected themselves 18 secs > CS 2 It’s affected my parents life because at home we were told that I had an eye condition but it wasn’t actually diagnosed. And coming to London my Father had a hope that it would be diagnosed and there will be a cure for it but he gets told that there is no cure and this is what the eye condition is and it can progress. So, it had a huge impact on him because he feels he’s responsible for the whole eye condition problem that I’m facing because it’s a genetic disorder. So sometimes he emotionally feels quite weak 27secs > Retinitis Pigmentosa still has no cure. But why is this? Georgina Hall and David Head explain > Y no cure GH Genetic conditions as a group of conditions are very difficult to find treatments and cures because they are obviously part of your genetic makeup so it’s part of the way your body’s been put together. Cause its part of your genes, and there are lots of different genes in RP, it has been a very tricky condition to work on. DH RP is a very complex condition. It’s caused not just by a single gene floor. There are up to 500 different genes implicated, depending which scientist you talk to. Some very complex genetics and very complex bio-chemistry involved and the research we’ve done has been untangling things only to find even more entanglement that needs to be worked on 41 secs > Even though there is still no cure to RP; a lot of money and time is being spent on research to try and find one. But for research to take place it’s critical to raise public awareness.. Louisa Lytton, who starred in EastEnders and The Bill, is doing exactly this > LL 1 My cousin was diagnosed with Retinitis Pigmentosa when he was 12 years old, he’s now 26, I’m two years younger than him so I was ten. Growing up around him I think I was aware that obviously it was an eye condition but I was never really aware of exactly what it was or how much it was affecting him until maybe five years ago. Seemed to be the first time that me and my cousin actually sat down and had a conversation about the condition that he had. So that was kind of when I was aware really what Retinitis Pigmentosa was 33 secs > As well as Louisa being aware of her cousin having this condition. Recently a close friend of hers was diagnosed which galvanised Louisa to take action > LL 3 I’m now producing a documentary called Don’t Look Back which we’re hoping to have televised within the next six months to a year. As long as more people are aware of this condition then that’s all I need it to do. 33 secs > DH 4 Every time we’re mentioned in the media or every time a celebrity is prepared to talk about the condition, if it affects them or if it affects a member of their family. Then it certainly helps. To give you another example recent coverage and expression of support from Jeremy Vine and on Radio 4 is very helpful to us. And when there is some media exposure as a result of a high-profile person talking about it. We see an upsurge in visits to our website and people asking us for information and sometimes people supporting us financially 33 secs > it is fantastic to see the likes of Ex EastEnders star Louisa raising awareness about this condition. There are also many others as David has mentioned doing the same thing. RP Fighting Blindness feel very strongly about raising awareness as this condition is becoming very common > DH 5 It’s very interesting the question of awareness because in the UK for example inherited Retinal Dystrophies are now the largest cause of sight loss in people of working age. And that’s because the incidents of diabetic retinopathy reduced as a result of treatment and screening. So now inherited retinal dystrophies are the largest cause of people being registered blind. And yet if you were to ask the man in the street if he’d ever heard of Retinitis Pigmentosa the chances are that person would say no. So there’s definitely a job to do in raising awareness of RP of retinal dystrophies and of the issues that people who have retinal dystrophy face 45 secs > Even though RP is a hereditary condition me and my sister cannot trace it back in our family. Georgina Hall told me that this is a common occurrence and this form of RP is called recessive RP > GH 5 Recessive RP They’re all genetic but I think it can sometimes be confusing because people put genetic and hereditary together. They don’t always run from one generation to the other depending on what type of gene change it is. They can recur in families but in different patterns. They’re may be up to 200 different genes that can cause RP and retinal dystrophies and there all inherited in different ways. Out of the whole group of RP, recessive is the most common. All of our genes come in pairs so for all 30,000 genes, instructions in our body we’ve got two copies of them. We inherit one copy from mum in the egg and one copy from dad in the sperm. In recessive RP somebody has two faulty copies. So for their particular gene both copies have a fault in them. So when the body’s trying to read that instruction neither of them are working > The way that recessive RP comes about is the child inherits two faulty copies of the gene. One from mum and one from dad. The other copy of the gene is normal, which is enough to compensate. Mum and dad will have normal vision but they’re what we call carriers and then it’s by chance and bad luck that when they had children together they both past on a faulty copy of the gene. Erm and in that type of inheritance we can see brothers and sisters affected but we don’t tend to see previous generations because although people might have been carriers in the family the condition would only show itself if they married another carrier and both past on a faulty copy of the gene. MANY of actually are carriers of gene changes and its only if our partner happens to carry the same gene change that it would show itself in the children 2 min 10 secs > Dr Kumar highlights the importance of genetic screening and has more advice for patients > VJK 1 what I would tell a patient whose got Retinitis Pigmentosa is of course first thing is to get genetic advice that’s very important because it is something he is going to pass it down to his children and so on. But leave that to one side. Apart from that the advice I’d give is to take palmitate, it’s a specific vitamin A PALMITATE, that is the drug which the patient has to take. And what it does is it tends to slow down the condition. Another recommendation for slowing the vision loss is to wear sunglasses to protect the retina from the rays of the sun particularly the ultra violet light and that’s what is very damaging so the all patients with Retinitis Pigmentosa should protect their eyes all the time just to ensure the harmful rays do not have an adverse effect on the Retina 46 secs > Steven Goulden is a 64 year old civil servant. He was diagnosed with RP in 1955. Genetic screening was crucial in identifying whether his children would’ve RP. > SG 2 We were a bit worried at some early stages because of the inheritance patterns of RP. I had the genetic screening and I found out my inheritance pattern was X linked so my son was fine. My daughter will be a carrier. > GH TESTING 1 In the UK there is an NHS test that can screen for 180 of the genes involved in the retina. Genetic testing has expanded enormously over the last 5-10 years so five years ago we were able to test for a few of the genes particularly in the X linked types of RP  and we were able to offer genetic testing. So the X linked type is the type that affects boys. There are two genes that cause that and we were able to test for those. But for the other genes we really didn’t have very good mechanisms cause it was very complicated, there was so many. So we think our current detection rates are about 60-70%. There are still a lot of people who have the tests and we still can’t find the genetic cause but our tests are getting better 49 secs > SG 3 It has affected of course it has affected the family but I think they’re very positive about sight loss. My eight year old grandchild she is very helpful will take my hand come on grandpa I’ll take you here you know so they treat it as a matter of fact basically   > Genetic screening may identify the condition. But the ethical questions it raises can be very difficult > GH TESTING 2 If we can find the gene in the family. If we go back to the recessive I explained earlier where we know that mum and dad are both carriers. They’ve got in fact a 25% chance of both passing on the faulty gene. We can use genetic testing to find out who in the family are carriers and then if they wanted to make choices around that there would be options. The options are not easy options so if parents are both carriers it’s possible to test the baby during pregnancy to see if they’ve inherited two faulty copies and in theory with some genetic conditions parents would chose to terminate that pregnancy so as not to pass those genes on. There are other options using an IVF pregnancy and something called pre-implantation genetic diagnosis where babies can be fertilised in a laboratory and early embryo’s tested for genes and couples can choose to have embryo’s implanted that don’t carry faulty genes > Research for a cure is taking many different form. RP Fighting Blindness are funding some of these trials > DH 7  Well we’d like to invest more money if we could into medical research it boils down to money of course these things do. We live in austere times and medical research is very expensive. We’re funding about a dozen different projects all of them in the UK at the moment. Funding work on gene therapy, on genetic testing, on the use of drugs, on the application of stem cell therapy. We’re doing what we can with the money we have is the short answer. To put that into perspective our two largest projects at the moment. Funding some work at UCL institute of ophthalmology on the development of gene therapy and that’s a total investment of three quarters of a million pounds and we’ve just announced the start of a new project which we’ve called the RP genome project which is about RP genetics, genetic testing and gene hunting and that’s an investment of 1.2 million pounds over the course of a three year period > So things are being done but what’s exciting medical professionals for the future. Research VJK Lots of research is going on in Retinitis Pigmentosa. The things they’re doing are gene therapy because it is a genetic condition, it’s a mutation. Mutation basically is the gene keeps changing and that’s was causes Retinitis Pigmentosa. And the second thing they are doing is stem-cell therapy again injecting stem cells. Stem cells are the precurse cells of all your cells in the body, that’s where everything forms. So you can grow tissue from a stem cell you can grow a cornea, you can grow muscle everything from a stem cell in a laboratory. Now they’re trying to work on that and see whether they could do that declutch the retina, to replace the retina. And the other thing is interestingly in America they’re trying it’s an implant actually it’s called an Argus Retinal Implant. This has received approval and they trying to implant this in certain patients to see whether that has got any benefit. Basically what happens is you put the implant in the eye then you have a special sort of an electrode which is attached to your spectacles  and basically what it does is the implant sort of picks up the light energy converts them to electrical energy and transmits to the brain 1 min > So there are hopes and new ideas around treatments but it is the aim of charities like RP Fighting Blindness to ensure that sufferers are aware of these latest advances > DH 6 To date we haven’t really described ourselves as a pressure group. I think increasingly, there will be a case for us to be more of a patient voice in the future. Our role to date has been about raising money for funding medical research and about providing support and information to people. There are a few issues specific to RP that are emerging for example getting access to treatments as they develop and as clinical trials are completed. And it might well be that this organisation has to adopt a bit more of a patient representative or campaigning role in the future.  38 secs >  Although patients with RP lose their sight. Making this documentary has shown me that we will never lose hope for a cure > Georgina Hall: Having worked in this area for a long time I think we feel a lot more hopeful than we did. I don’t think it will be a single cure. I think there will be lots of different treatments and it won’t just be one answer because there are so many different genes. There’ll be different answers for different types of RP. I think that for some types of RP there may well be some treatments that will be coming in the future. The difficult thing to know is when. Steven Goulden: I do. I’m very positive about that, I think it will happen. I’m hoping it’s going to be in my lifetime but it’s taken a long time to get to this stage so maybe, maybe not. Louisa Lytton: I pray and I ask every day that there is a cure. It’s obviously very hard to say when there will be a cure but I definitely think that there will be. Chandni Sony: I definitely think there will be a cure. It’s a matter of years it may not be one or two it might be ten or twenty but I definitely think there will be a cure for it. David Head: Yes. I definitely do. There will be a therapy or there will be therapies. The uncertainty is over the time scales. But I have no doubt, no doubt at all that therapies, treatments, cures, preventions will all be available in the future. Ruth Walmsley: I think it’s a difficult one to actually say. There’s certainly a lot of research, a lot of progress. Personally I think it will be here, whether it will be in my lifetime I couldn’t say I’d leave that to the researchers. I think the important thing is to keep your finger on the pulse and making sure that you’re aware of what research there is and what’s available but not forgetting to live your life in the meantime. Don’t sit around waiting for a cure because you know you could be wasting so many happy hours of activity and getting involved and really doing things and having a good purpose in the community. > Going blind, that’s what we WERE talking about. I may be blind but I have a vision. Steven’s blind but he has a vision, so does Ruth, so does Chandni. We all do. We have a vision, along with all the other sufferers of RP, a vision for a bright future, a vision for a cure to Retinitis Pigmentosa > fade out > TW: This documentary was directed, produced and recorded by TheBlindJournalist Mohammed Salim Patel. Visit theblindjournalist.blogspot.co.uk for more of his work.

TheBlindJournalist: Blind Shooting

listen to ‘TheBlindJournalist: Blind Shooting ’ on audioBoom

TheBlindJournalist: I Spy With My Bionic Eye

I Spy With My Bionic Eye

 

Mohammed Salim Patel explores the medical breakthrough in curing blindness.

 

What many thought would be impossible, ten years ago, is now becoming a reality. In America Bionic Eyes are now being successfully implanted to cure blindness. 

 

After many years of medical trials on animals, and some human guinea pigs, there has now been a handful of successful treatments using bionic eyes to restore vision in people who suffer from certain eye conditions.  

 

Allen Zderad, 68, from Minnesota is one of those who has restored partial vision due to this bionic eye called The Argus ll. He suffers from a degenerative eye condition called Retinitis Pigmentosa which caused his blindness. However, through this implant he now has artificial vision which allowed him to see his wife for the first time in ten years.

 

The implant enables those who have gone blind from Retinitis Pigmentosa to see outlines of objects.

 

Dr Anaswami V J Kumar, a retired Consultant Opthalmologist at the Royal Blackburn Hospital, said:

“The implant will allow the user to see things like the frame of a door or a handle on a fridge. They can also get a sense of how many people are standing in front of them.”

 

How it works:

A patient wears a pair of glasses which are fitted with a camera that sends a video signal to a wearable computer that the patient wears on their hip. This computer then processes and formats the signals. That data is then wirelessly sent to a grid of sixty electrodes which have been surgically implanted in to the patients eye. The visual information activates the implant to send a series of impulses to the retina. These are then interpreted as vision by the brain.

 

The Argus ll is hoped to also help those with other eye conditions such as advanced macular degeneration.

 

Zainul Patel, 34. From Preston also suffers from Retinitis Pigmentosa, he said:

“I am very happy to hear about this breakthrough. I have lost my sight because of Retinitis Pigmentosa. I can’t see my two sons or wife. It would be life changing if the Argus ll became available through the NHS so that I could see how much my boys have grown and see my family once again.”

 

This bionic eye is light at the end of the tunnel for many. But for some seeing there wife again may be a sight for sore eyes!

 

To listen to the audio podcast for this edition visit:

https://audioboom.com/boos/3018300-orbis-edition-5-podcast

 

 

TheBlindJournalist: Sight loss is depressing

TheBlindJournalist: Jack Straw's Life As Blackburn MP

“Blackburn is my soul…”
These aren’t my words but the words of Blackburn MP Jack Straw. 
I interviewed the former Home Secretary at his office on Richmond Terrace on Friday 24th January 2014.
After succeeding Barbara Castle in 1979, at the age of 32, Jack Straw has kept his role as MP for an impressive 35 years but has now announced his retirement from politics.
Rather than focus on all the work Mr. Straw has done I felt I would focus on a matter close to my heart and to many fellow constituents of Blackburn; the matter of, segregation between the Whites and Asians in the town.
I am a Blackburn lad born and bred. In my 19 years in Blackburn I was aware that the town was segregated but I never knew that the ratio of Whites to Asians was larger. I thought it would have been equal or that there were more Asians.
I study in Preston and I spent five years at a boarding school in Liverpool so I haven’t spent much time in Blackburn but the shops I go to, the areas I spend time in, the people that I see are all Asians so to me it seemed that there were more Asians than Whites.
I wanted to find out from Mr. Straw what he feels he has done for the town in his 35 year reign and whether his constituents feel he has done a good job. I went into Blackburn Town Centre to do exactly that.
It was a wet and miserable day. Shoppers shopped minding their own business getting done what they needed to. This wasn’t good for me, a random Asian teenager approaching Asians and Whites asking them about their feelings of who they share their town with.
I asked the residents of the town:
What are your views on the matter of segregation in Blackburn between Asians and Whites and what do you think Jack Straw has done about it?
They probably thought I was mad asking about race in a time when people are afraid to say what they really feel as they’re scared of being labelled as a racist.
Gill, a 54 year old retired teacher, hesitantly told me that her parents grew up in the town and her grandchildren now also live in Blackburn. She paused, then said, talking about the Whites, ”It’s not our town anymore. We are getting pushed out slowly but surely. Jack Straw’s done nothing for us Whites, he’s only focused on listening to what them Asians have to say.” She stopped talking probably worried of what she’d just told me. I thanked her and she continued on into M&S.
On my way to Mr Straw’s office for the interview, I passed groups of students from Blackburn College, of which Mr. Straw is a governor. The students were either Asian or White, there was no mix. Even in the restaurant near Mr. Straw’s office, diners sat segregated by their ethnicity. There were only a few tables where there were Asians and Whites socialising and enjoying what looked to be a very tasty meal.
I went into this restaurant and asked the owner, Maqbool  Patel, what he feels about segregation. In between food orders, he told me that he loves working at his restaurant; he gets to meet new people every day. But the segregation is clear to him, however he sees this changing because of Jack Straw’s work.
To my knowledge there isn’t a sense of hatred between the races but just a lack of willingness to integrate. Mr. Straw, who was a very calm, open interviewee, sat chewing a mint as I grilled him on his life as the Blackburn MP.
I interviewed Mr. Straw in the room known as the Barbara Castle meeting room. A small room occupied by an oak board room table and framed speeches and pictures of Barbara Castle and Mr. Straw.
From 1981 to 2013 there has been an increase of nearly 25,000 Asians in the town and the population of Whites has decreased.
I shared Gill’s feelings with Mr. Straw, he sat back in his chair and very openly told me that If your elected as MP, regardless of National duties, your constituency is the most important. You treat your constituents and their needs with respect. Your duty is to your constituency and its residents regardless of whether they are White or Asian.
I nodded feeling very taken aback by his answer. My respect for him grew a lot after he said this. He sat forward and continued on, I didn’t invite the Asians to Blackburn but as MP I have to work with all my constituents and do my best to make them happy. If the Asians didn’t come Blackburn would have had another issue of being depopulated.
In Mr. Straw’s defence he has worked very hard for the town not only on the matter of segregation but to help businesses and also the education side of the town. A scheme that Mr. Straw has openly supported is the Blackburn Youth Zone, a large orange coloured futuristic looking building that hosts many different activities aimed at 8 to 18 year olds to help create cohesion between the young Asians and Whites of the town.

Junaid Patel, a 20 year old ambassador for Blackburn Youth Zone, stood in his black ambassador hoody after giving a talk to some youngsters. He very pleasantly told me that Blackburn Youth Zone is a great scheme and it is about time something was done to tackle this issue of segregation. Aiming the scheme at the younger generation of the town is the best way. For the sake of the town and it’s future something needs to be done. He hopes Blackburn Youth Zone is the scheme to create cohesion and a better more loving and integrated town.
From my interview with Mr. Straw it became clear to me he is truly passionate about his town and when he says Blackburn is his soul he really means it.

TheBlindJournalist: Be My Eyes Application

listen to ‘Be My Eyes demonstration ’ on audioBoom

Will you Be My Eyes?

 

The smartphone market is inundated with applications or ‘apps’. These applications can vary from games to banking tools. But this market is also being used to create apps which assist the blind and visually impaired.

Be My Eyes is the latest arrival in the Apple App Store, which has been trending worldwide with 90,957 tweets from January 17^th to February 16^th – according to topsy.com

The app has been created by Hans Jorgen Wiberg, who is visually impaired himself. He showcased the idea in April 2012 at a Startup Weekend in Denmark. Hans told In Touch, BBC Radio 4’s disability programme that:

“I am visually impaired myself.

When I got myself an iPhone I started to use FaceTime, which is a video chat application. I told a few of my blind friends about FaceTime and they told me that they use this to gain assistance but that they needed to make sure someone on the other end was always free to help them. So I came up with this idea to get a group of volunteers who could answer a call and help blind and visually impaired users.”

The way that the application works is:

ü  When a user downloads and opens the app. Two options will appear – Sighted or Blind. Volunteers would choose sighted and those who need assistance would choose blind.

ü  You then sign up according to which option suits you – signing up is free

ü  You select which languages you speak and enter your name.

ü  For blind users a button will appear that says ‘Connect to sighted helper’ when they press this a signal is sent from the phone to a server which randomly connects to a sighted helper, who speaks the same language, and if that helper doesn’t pick up within ten seconds the server will reconnect to a different helper.

ü  The blind user then points their camera towards the item they need assistance with e.g a microwave ready meal then the sighted helper will guide the user until what they are looking for comes into frame e.g. how long to put the meal in the microwave. 

The Royal National Institute Of Blind People released a press release on this app, which says:

“For blind and partially sighted people who use a smartphone, Be My Eyes is an important and innovative new development which could make a big difference to their lives. This is another example of an accessible app which has a really practical benefit for people with sight loss, and at RNIB, we’re particularly supportive of initiatives which find new ways to help people complete everyday tasks such as cooking and shopping.”

 

However, there have been concerns raised about possible privacy breaches i.e blind users showing confidential documents to the helpers but Hans added:

“The blind user should only use this app for assistance with sensible things”

Currently the app is only available to download, for free, on the apple iPhone Store however, there are plans to extend the use to other Android markets. Funding is only secured until September 2015 after which subscriptions may be introduced or donations could be requested from users to keep the application running.

At the time this article was written Be My Eyes had 135,000 volunteers registered to help the blind and visually impaired. There were 12,400 blind users and 38,600 people helped through the app.

To listen to a demonstration of how this app works, visit http://orbis.uina.org.uk/