National Newsletter Summer Edition

CCB National Newsletter

Special Edition: Summer 2016

 

++Message from the Editor

There is always something happening at CCB, even during these hot summer days!

 

Our newsletter usually breaks for the summer months, as do our chapters, but recently there have been so many positive things happening within the Council, that I felt they couldn’t wait until September!

Recent developments include:

  • The Marrakesh Treaty reaching 20 ratifications
  • Meeting with Minister Carla Qualtrough, Minister of Sport and Persons with Disabilities, twice
  • Joining the board of two advocacy organizations
  • Formation of a new chapter in Chatham, ON

 

Please read on to discover all the details of the many things CCB has recently been involved with. Enjoy the read, and have a wonderful summer—Mike Potvin, Editor.

++CCB Update:

Lots of positive, new and exciting things are continuing to happen at CCB! There has been a lot of activities at all levels with sports events, meetings, planning for the future, the Mobile Eye Clinic (MEC), Get Together with Technology (GTT), and summer students at various locations across the country. Read on to find out what CCB members have been up to lately.

 

++CCB Supports Active Living!

Here are some interesting highlights from our CCB Blind Sports Chapter in Halifax, NS:

 

++Atlantic Sports Weekend:

The Atlantic Sports and Recreation Weekend was held in Halifax and surrounding area on the long weekend in May. There were approximately 80 people in attendance who took part in a variety of activities making it a great time for all.

 

++Trust Your Buddy Chapter:

The CCB sponsored program, Trust Your Buddy (TYB), run by Ryan Van Praet and located in Southern Ontario is going strong and has recently formed the new CCB Chatham Chapter.

 

Through the program, individuals who are blind or low vision continue to be introduced to accessible sports such as curling, tandem cycling and golf while improving their health through active living.

 

 

++Ontario Visually Impaired Golfers (OVIG):

OVIG will host a group golf clinic on Sunday, July 10, 2016 for people who are blind or visually impaired and are interested in learning, or resuming the game of golf.

 

Date and Time: Sunday, July 10 at 11:30 a.m.

Cost: $20.00 ((free for first-time participants)

Location:  Cambridge Golf Club, 1346 Clyde Rd, Cambridge, ON

Optional 9 holes after the lesson

 

To register, and for directions:

Call: (905) 415-2529 – or email: wcook@endtoend.com

 

Besides the above, OVIG will be holding golf outings on July 10, July 21 (fund-raiser), July 24 and Sept. 24. It will also host the 2016 Ontario Open Blind Golf Championships, Aug. 12 to 14. Details on these events are available on OVIG’s website: www.OntarioBlindGolf.ca

 

PLEASE NOTE: Spectators and volunteers would be very welcome at the 2016 Ontario Open Blind Golf Championships in mid-August. To learn more about these opportunities, please contact us as below. Your interest, and involvement would be greatly appreciated!

 

Call: (905) 731-1114 – Or email: OntarioBlindGolf@rogers.com

 

++The Mobile Eye Clinic (MEC)

continues to help students get their eyes checked and detect undiagnosed vision problems. With the MEC, CCB is helping to promote good eye health and prevent vision issues for Canadians.

 

++Get Together with Technology (GTT)

continues to thrive and grow. New groups are starting up across the country and more people who are blind or living with vision loss are learning how to use technology and discover new devices to support their independence.

 

For more information on GTT, or how to get involved, please contact Kim Kilpatrick at gtt@ccbnational.net

 

 

CCB Advocacy

++Canadians with Disabilities Act:

As many are aware, part of the Liberal Government platform was to develop a Canadians with Disabilities Act. They have now invited groups to work together to provide input/direction on the formation of the act. CCB has joined with several other groups and we are now waiting to hear about next steps on this venture.

 

The Hon. Minister Carla Qualtrough will be holding consultation sessions throughout Canada in the fall and we encourage CCB members and friends to attend one near you.

 

On June 22nd, with CCB in attendance, Minister Qualtrough launched a consultation to inform planned accessibility legislation that will transform how the Government of Canada addresses accessibility. She highlighted the importance of accessibility and affirmed the Government of Canada’s commitment to ensuring all Canadians are able to participate equally in their communities and workplaces.

 

The Government of Canada is seeking input for this planned legislation, including:

 

  • feedback on the overall goal and approach;
  • whom it could cover;
  • what accessibility issues and barriers it could address;
  • how it could be monitored and enforced; and
  • what else the Government of Canada could do to improve accessibility.

 

All Canadians are encouraged to have their say in the consultation process, either by attending one of the 18 in-person engagement sessions, which will start in September and be held across Canada, or by participating in the online consultation, which will be launched in the coming weeks.

 

Canadians are also encouraged to follow @AccessibleGC on Twitter, Accessible Canada on Facebook and to follow the #AccessibleCanada hashtag. The consultation process will run until February 2017.

 

For the most up-to-date information on in-person venues and dates, and to participate online, please visit www.Canada.ca/Accessible-Canada.

++Best Medicines Coalition:

This is a group of 60 – 70 patient groups which has asked CCB to join their board. Their main focus is to have the “best medical treatment, by the best people in the best time”.

 

CCB has had representation at many of the meetings called by this group over the years. To gain support from other organizations it was decided that CCB make a request to become an active member of this group and have been accepted. This group will give us strength when we are attempting to ensure Canadians get the best eye care possible.

++Update on the Marrakesh Treaty:

The World Blind Union, which CCB is a part of, has worked for many years to make improvements to the copyright act so that printed material can be made available in the format required by the individual. We are very pleased to announce that has come to a great point in Canadian history!

 

The Honourable Carla Qualtrough, Minister of Sport and Persons with Disabilities, and the Honourable Navdeep Singh Bains, Minister of Innovation, Science and Economic Development, joined representatives from CCB, WBU and CNIB on June 13, 2016 to commemorate the occasion of the passing of Bill C-11 – Amendments to the Copyright Act through Parliament.

 

We can all celebrate that Canada is moving forward on the Marrakesh Treaty and the Government of Canada’s efforts to break down barriers for people with disabilities thanks, in part, due to the hard work of CCB members.

 

Continuing with the positive news regarding the Marrakesh Treaty, on June 21, 2016 CCB President Louise Gillis and Diane Bergeron from CNIB had the honour of sitting in the Senate gallery to witness the third reading of the bill in Senate, and to listen to the discussion and hear the vote which was AFFIRMITIVE.

 

++MARRAKESH TREATY REACHES 20 RATIFICATIONS NEEDED TO ENTER INTO FORCE

 

We are extremely pleased to announce that on June 30, 2016 the MARRAKESH TREATY reached 20 ratifications.

 

Led by WBU, CCB has worked on this since the beginning along with CNIB. CCB has become more active in the past six years by reaching out to our government to amend the copyright act, so this is something for us to be really proud of!

 

CCB currently has two active voting delegates on the WBU, Louise Gillis and Jim Tokos, whom are proud of the contribution CCB members made in helping to bring this to fruition.

 

++PRESS RELEASE:

 

MARRAKESH TREATY REACHES 20 RATIFICATIONS NEEDED TO ENTER INTO FORCE

 

Toronto, June 30th, 2016 – Today is an historic day as Canada became the 20th country to ratify the Marrakesh Treaty (full name is the Marrakesh Treaty to Facilitate Access to Published Works by Visually Impaired Persons and Persons with Print Disabilities).

The twenty ratifying countries will be able to enjoy the benefits enshrined in the treaty that are meant to extend the same access to literature and information for print disabled persons that non-print disabled persons already enjoy.

 

“This is another historical day for our movement,” said Arnt Holte, President of WBU. “It was a great victory when we managed to get a treaty securing accessible books for blind and print disabled persons, but the real victory was achieved today – when Canada became the 20th country to ratify the Marrakesh Treaty.

The treaty will enter force in three months, on September 30th, and then millions of blind and partially sighted persons will be able to access literature and educational materials, enabling them to better participate in their society,” he added.

 

The WBU led the international campaign in partnership with the World Intellectual Property Organization (WIPO) to achieve the development of an international treaty that would put an end to the global “book famine,” which refers to the less than ten percent of published materials being available in accessible formats and often less than one percent in developing countries. The great achievement today offers much cause for celebration for the WBU and its partners.

 

“After many years of hard work by countless people in the blindness community and partners from a range of sectors, we are now at the start of a new phase of our work,” said Maryanne Diamond, WBU Chair of the Right to Read campaign and a leader in the fight for the Marrakesh Treaty.

 

However, we still have much work to do in order to end the book famine. “As we celebrate and look to the future, we cannot forget that worldwide ratification is still a long way off,” said Ms. Diamond. “We need to continue our work together to ensure the treaty can be implemented and used by blind and print disabled people irrespective of where they live in the world,” she added.

 

The WBU calls for every single country to ratify the treaty, and then to effectively implement its provisions for the production and cross-border sharing of accessible works in order to achieve the treaty’s overarching goal of furthering the human rights of persons with print disabilities by promoting their access to literature and information.

 

You can learn more about our Marrakesh Treaty Ratification at: http://www.worldblindunion.org/English/our-work/our-priorities/Pages/right-2-read-campaign.aspx

 

++The Canadian Ophthalmology Society

CCB was in attendance at the Canadian Ophthalmology Society’s annual meeting which was held in Ottawa in June. One topic of discussion was the anti-VEGF treatment.

 

Anti-VEGF is the medication used to treat Age Related Macular Degeneration (AMD), Diabetic Macular Edema (DME), and Retinal Vein Occlusion (RVO). Using a treatment other than medication approved by Health Canada is not the quality of care that is recommended by many ophthalmologists and patient groups. CCB recommends the best care possible for Canadians diagnosed with these eye diseases is the best time to avoid blindness. Delays caused by using “off-label” medication for several months before switching to Health Canada approved products is not optimum care.

 

++International Federation on Ageing

 

International Federation on Ageing, an organization that deals with different issues relating to seniors has asked CCB to join their “Eye See You” campaign. CCB has gladly agreed to assist in their campaign, which is conducting a random survey of Canadians on eye care. They are also doing an article in the National Post on eye care for which CCB has submitted an article on the importance of eye care.

 

++CCB Advocacy for Eye Care Article:

 

The following article appeared in the National Post on June 21, 2016.

 

“The Canadian Council of the Blind (CCB) is governed by individuals with vision loss, and part of its mandate is to promote eye care and prevent blindness. CCB promotes measures to conserve sight, create a close relationship with the sighted community and provide employment opportunities. As the largest membership organization of the blind and partially sighted in Canada, the CCB is the “Voice of the Blind™”.

 

The CCB recognizes that vision loss has no boundaries with respect to gender, income, ethnicity, culture, other disabilities or age. The CCB understands that in many instances vision loss is preventable and sometimes is symptomatic of other health issues. For the 21st century, the CCB is committed to an integrated proactive health approach for early detection to improve the quality of life for all Canadians.

 

Eye health can often be the very lowest medical concern to be attended to for Canadians because, in the majority of cases, one does not die from eye disease. Therefore it is very important to bring eye care to the forefront so that the best possible treatment can be provided before major problems occur.

 

Advances in medical research have resulted in several pharmaceutical products which can dramatically reduce vision loss brought about by vision threatening eye conditions. Health Canada has approved specific products to treat these conditions.

 

However, there are other products which have been and continue to be used for cost effective reasons. These untested products have not gone through the rigorous testing required by Health Canada and yet are going to be recommended to the provinces so they can save health care dollars. Is this what we want for Canadians? CCB does not believe so. Why should a person have to use unapproved eye treatment for three to six months prior to getting the option to have “approved” treatments which could improve the quality of life?

 

Patients who visit their eye doctor for the treatment of conditions such as Age-related Macular Degeneration (AMD), Diabetic Macular Edema (DME), Retinal Vein Occlusion (RVO), or Choroidal Neovascularization in Pathological Myopia (CNV) need to be fully informed of their choices in which drug to have injected. This informed choice should include (but is not limited to) information about the side effects of each available medication, the number of possible injections required, and treatment COST.

 

Treatment COST should not be the deciding factor. Sometimes costs can be less in the beginning but with inadequate improvement in vision, treatment can become more costly. Currently there are two available drugs for treatment of these diseases, and patients need to have a choice in approved treatment.

 

CCB has worked with other patient groups to enable Canadians to get the best eye care possible. Research supports the use of current therapies in treating AMD, DME, and RVO and until such time that unbranded drugs can be fully tested and approved by Health Canada then only branded treatments should be available.

 

Eye diseases can have a major impact on a person’s career, independence, family responsibilities, quality of life and daily living. CCB sponsors a major project to help prevent blindness – a mobile eye clinic. The “Mobile Eye Clinic” provides on-site eye exams at retirement homes and schools. It has been found that over 60% of seniors examined were in need of eye care and many of them with the conditions mentioned above. Approximately 26% of students required further eye care.

 

The need for proper eye care is evident and that the patient gets approved medications to treat these conditions is even more important so that they can lead an improved quality of life.”

 

++Canadian Transportation Agency (CTA):

 

CCB was in attendance at the Canadian Transportation Agency (CTA)meeting on Monday, June 20 in Ottawa. This meeting was to announce their plan to change their “Codes of Practice” to “Regulations”. They had cross disabilities present along with air, train and ferry companies and they will have further meetings to work through this process over the next number of months. CCB will be getting input from members for this process.

 

Also, VIA Rail made a presentation on their plan for purchasing a new fleet of rail cars for the Montreal – Windsor corridor. They are doing a survey of current passengers as to what they see as important to ensure the cars are accessible. VIA will be sending CCB more information as it becomes available which we will get out to members for their feedback.

 

Assistive Technology

++Declare your Independence with KNFB Reader!

 

This July 1-7, 2016, KNFB Reader will be on sale for $64.99 USD, 35% off the regular price.

 

Wondering how KNFB Reader can help you achieve your independence? Here are some comments from KNFB Reader users about how KNFB Reader helps them live the lives they want, independently:

 

“I can read the directions of my brownie mix.”

 

“I love the fact that I can read my children’s school reports.”

 

“Because of the app I can now troubleshoot things on my computer when the screen reader is frozen. I can read the screen of a television in case of a cable programming error.”

“Today I used KNFB Reader to read the PIN on a new credit card.”

 

“I use it to read restaurant menus. I tell people, it’s like having eyes in your pocket.”

 

KNFB Reader: take a photo, the app reads the print aloud. It has automatic text detection, tilt guidance and a field of view report that helps the blind user get the best photo. You can even scan multiple pages in batch mode, and if you wish, you can save your files to DropBox and refer to them later. It is compatible with connected Braille displays.

 

KNFB Reader supports nineteen languages including: English, French, German, Dutch (Belgium), Dutch (Netherlands), Italian, Spanish, Portuguese, Danish, Swedish, Turkish, Polish, Norwegian, Russian, Finnish, Ukrainian, Estonian, Bulgarian, Czech, and Greek.

 

To learn more about KNFB Reader, visit www.knfbreader.com

The app will be available for $64.99 USD from July 1-7, 2016. Available in the iTunes and Google Play stores for iOS and Android.

 

 

These are just a few of the positive impacts CCB is making in our community as we continue to grow and support those living with vision loss. Stay tuned for more to come in future newsletters!

 

 

HAVE AN AWESOME SUMMER!