Newfoundland and Labrador Newsletter
April-June 2016

In this Issue:

Editor’s Corner

By Lynsey Soper

We hope you all enjoy the articles in this edition of the CNIB-NL newsletter. We had an amazing dedicated volunteer team who made this newsletter a reality; Courtney Gosse, Yong Ko, Trevor Freeborn, and Robert Sterling. If you have any comments, questions, or an opinion you want shared with the CNIB-NL newsletter team, just contact us by mail at 70 The Boulevard, St. John’s, A1A 1K2, fax at (709) 754-2018 or email at lynsey.soper@cnib.ca.

Inspirational Quote

Submitted by: Courtney Gosse, CNIB Volunteer

I can't change the direction of the wind, but I can adjust my sails to always reach my destination
- Jimmy Dean

Highlight of Staff Member: Kimberlie Hart

“Choices of the Hart”: By Courtney Gosse, CNIB Volunteer

Kim Hart with her husband and two daugthers
Kimberlie Hart has been working as the Early Intervention Specialist for CNIB since November 2012. Kim works closely with families who have children who are blind or partially sighted from Labrador and Eastern Newfoundland. She provides many services to these families including: teaching skills needed to raise a child who is blind or partially sighted, counselling, advocacy, and referring families to support groups and community and government services.

Kim also works directly with children to make sure they reach their developmental milestones. She also runs the Snoezelen room; a multi-sensory room located in St. John’s.

Before Kim became part of the CNIB team, she worked as a full-time special education teacher with the school board for a few years, but she decided she needed a change. Kim prefers working with an entire family; not just the child. Kim could not see herself in any other job; she would miss the clients as well as their families too much to leave.

Kim describes her job as being both busy and rewarding. Kim’s favorite part of her job is working with the children. Her biggest challenge is taking her work home with her; she is always thinking of new ideas for clients. Kim’s job requires her to work with clients, their siblings, their parents, and sometimes extended family. She has the privilege of meeting many people on a daily basis.

Kim first found out about this position from a personal experience. Her daughter is blind and when her daughter was younger they relied heavily on CNIB. Robin De Verteuil, who was previously in the same job as Kim, was always there for them and was always a simple phone call away. Kim wanted to help people just as Robin helped her family. Robin is Kim’s inspiration for wanting this kind of job.

Kim has acquired many degrees and certificates over the years; a science degree, primary/elementary education degree, and special education degree. She also has a lot of experience working with children with special needs. But it’s her own personal experience that makes Kim exceptional at what she does; she can relate with families who may be in a similar situation.

Over the years Kim has had many happy memories doing her job. Some of her favorite memories come from the CNIB family camp, which she says is the highlight of her year. Her absolute favorite memory is from one year when they had a kitchen party with mummers.

Kim was born in St. John’s. One of her greatest passions is photography. Kim enjoys taking pictures, as well as examining pictures and using photo editing software. Kim hopes to own her own photography studio one day. Kim doesn’t have much spare time, but when she does she enjoys having a Tim’s coffee while surrounded by her shopping bags; a new toy for the toy lending library can be found in one of those bags!

Kim is a valued member of CNIB and all of her clients and co-workers are very thankful Kim decided to take this career path. CNIB is lucky to have such a helpful, supportive person working with children living with vision loss, and their families, in Newfoundland and Labrador.

Inspirational Quote

Submitted by: CNIB Volunteer, Courtney Gosse

The best preparation for tomorrow is doing your best today

- H. Jackson Brown, Jr.

“The Story of Courtney”

By Courtney Gosse, CNIB Volunteer

Courtney Gosse
I have been a client with the CNIB as long as I can remember; I was born in the year 1998. Currently, I am seventeen years old; soon to be eighteen. I was born with a visual impairment known as Optic Nerve Hypoplasia or ONH for short. When I was young I never understood what my visual impairment was, so it never got to me. I never cared or quite grasped any cruel words that were said to me. I was a very happy child. I still am a very positive person. But I won’t lie, I’ve had some dark periods in my life.

Jr. High was a difficult transition; by this time in my life I had a better grasp of what exactly Optic Nerve Hypoplasia is. From grade seven up until grade 10, there was a group of four girls who continuously made rude remarks about my visual impairment. I won’t get into details of what those names were, since they include foul language. But this rude behavior continued for three years, I stopped caring because with the help of supportive people I realized whatever cruel thing they said to me isn’t true.

Those four girls have all since dropped out of school and I’ll be graduating this year. Bullying doesn’t last forever. As long as you can remind yourself it doesn’t matter; then it can’t hurt you. It did drive me into a dark place; I have been the target of bullying for a long while now. It doesn’t bother me anymore; each insult people throw at me, I use as a way to grow stronger.

People think I get things easier in school; I don’t. I have to work harder than most each day to keep up with what is going on around me. Lately my vision has been getting worse, my visual acuity used to be 20/800 in both eyes, it’s now 20/800 in my right and 20/2400 in my left. I’m unsure what brought on this change in my vision but I will find out soon enough. My eyes are almost always in pain and tire very quickly.

At my school, this thing happened called the “Ugly List.” This list had myself and eleven other girls on it. People voted who they thought were the ugliest girl and in their minds, I’m one of them. As soon as I heard of this list, I knew I was on it before the guidance counsellor told me herself. I wasn’t shocked since I’m not well liked at school. I don’t know what sickens me more, the person who made the list or those who voted. They never found the person responsible.

All I have to say to that person is thank you. Thank you for bringing the twelve girls together and creating our new friendship. You tried to tear us all down, but we held each other up. 

My family is very supportive and understanding. Though sometimes I have to explain certain things to them; like when they ask me to get them something they can’t simply say “it’s over there” because I don’t know where “there” is.

Even after all of the negative people trying to use my visual impairment against me, I’m still going. I’ll be finished high school this June. My goal is to become a social worker. I sometimes find it odd that people use my vision loss as an insult. I see it as something that makes me unique.  Aside from wanting to be a social worker, I also love to write and sing.

I fell in love with writing at a young age. I’m now hoping to get one of my novels published. If you’d like to check out some of my older work, please look up coolcourtney5 on Wattpad. Wattpad is a reading, writing, and socializing website and app. I strongly recommend it. Wattpad has played a huge role in helping me regain my confidence. People are very kind and understanding on there.

My other great love is singing. I learned how to sing complete songs by the age of two and I’ve been singing all through the years. Check out my YouTube Channel: Courtney Zenera.

I honestly have so much more to say, but I’m still young. I haven’t lived my life yet, but I’ve been through so much already. I can’t simply sum up my life in such a short piece of writing.  I have so much more to say, and as time passes more and more of my story, my life, will reveal itself. Thank you for your time.

Courtney

YouTube: Courtney Zenera: youtube.com/channel/UCzsOThiLvLhaEhlBN_bCCuQ
Wattpad: coolcourtney5: wattpad.com/user/coolcourtney5

Vision Health Month

By Trevor Freeborn, CNIB Volunteer

May is Vision Health Month and an excellent time to explore the role of diet and nutrition in maintaining healthy eyes and preventing disease. Below is a list of foods to enjoy and also some to avoid.

Water: The only thing the human body needs more than oxygen is water. In fact we’re composed of nearly 70% water and the human eye even moreso. The vitreous humour which makes up most of the volume of the eye is 99% water. Our lacrimal glands secrete tears to our tear ducts, which are then spread over the eye through blinking, to help keep our corneas moist while cleaning away the dust and dirt that we encounter each day. Clearly water is an important component of our eyes and adequate hydration in the form of 6 to 8 glasses of water a day will go a long way to maintaining their health.

Leafy Greens: Dark leafy greens such as brussel sprouts, spinach, and kale (as well as dark berries, like blueberries and blackberries) are rich in lutein, a type of carotenoid vitamin, that protects against macular degeneration, the leading cause of vision loss in people over 60. It may not be the easiest thing to get your family, or yourself, excited about leafy greens but with a little creativity they can add a lot to your meal and your health. Brussel sprouts, may not be everyone’s favourite vegetable and admittedly are not the tastiest when boiled, but roasted in the oven with olive oil, salt, pepper and some fresh lemon juice, they can be a fast, simple and delicious side dish. Prewashed fresh spinach with sliced strawberries make for a quick and easy salad, and kale is suddenly very popular with the advent of kale chips. Also, fresh kale can be delicious when chopped and squished with a ripe avocado, lemon juice, salt and a little cayenne pepper.

Cold-Water Fish: Foods rich in omega-3s, like fresh cold-water fish and walnuts have been found to reduce inflammation in the blood vessels of the eye. Also, research suggests that eating more foods rich in omega-3 fats may slow macular degeneration. In fact, according to recent studies, those with the highest intake of animal-based omega-3 fats have a 60 percent lower risk of advanced macular degeneration compared to those who consume the least.

Foods to Avoid: No big surprises here: sugar, trans-fat and processed carbohydrates. Eating too many foods high in these can lead to diabetes, hypertension and more, which can all lead to poor vision health.

CNIB National Youth Council

By Courtney Gosse, CNIB Volunteer

Brandon Snow
The National Youth Council is a group of youth who are blind or partially sighted from across Canada. There are currently eleven members of the council; two of which are from Newfoundland and Labrador. One of the primary functions of the National Youth Council is to help youth in their communities have a voice. They make sure current initiatives, new programs and policies are reflective of and responsive to the needs of youth with vision loss. The National Youth Council works on many projects, including a Leadership Award, which is an award designed to recognize outstanding youth who possess great leadership skills. The National Youth Council is also working on a scholarship, and creating podcasts on several topics, including; guide dogs, dating, and goal ball. The National Youth Council has many projects in the works that will be revealed as time progresses. We are looking forward to seeing what they are working on!

The National Youth Council hopes to get more people involved, including CNIB, by not only expanding their audience but the council itself. They meet up once a year to have a face-to-face meeting and have meetings over the phone once a month.

Tyler Butler
The two members from Newfoundland and Labrador are Tyler Butler and Brandon Snow. They are happy to connect with anyone interested in joining the council or to discuss any ideas you would like to share.

To become more involved, please contact Tyler at (709) 765-4855 or tylerbutler123@hotmail.com, or contact Brandon at brandon.snow@cnib.ca. In addition, you can check out: cnib.ca/en/about/who/National-Youth-Council

CNIB Fundraising Highlights

By Trevor Freeborn, CNIB Volunteer

The CNIB fundraising and special events team had a busy and successful spring as they continue to plan, organize and host exceptional and inspirational fundraisers!

On April 28, Gitanos’ Supper Club and Tapas Bar in Corner Brook hosted 40 guests at CNIB’s Dining in the Dark blindfolded dinner with the help of featured sponsor Emera Newfoundland and Labrador. This was Gitanos’ fourth year partnering with CNIB for the event. 

May was a particularly eventful month featuring 3 Dining in the Dark fundraisers. Jungle Jim’s hosted our first of hopefully many Labrador fundraisers on May 3, which was a great success with the 40 diners who attended and according to word-of-mouth the local community is eagerly anticipating the next one.

There were also two St. John’s Dining in the Darks, both on May 18.  Local Mediterranean-inspired restaurant EVOO (an acronym for Extra Virgin Olive Oil, pronounced eevo) was the site of a lunchtime affair, their first. Gypsy Tea Room, now a perennial favorite, graciously hosted another successful Dining in the Dark dinner.

Special thanks to Browning Harvey and Manulife for sponsoring the event. Overall, these 4 events raised more than $18,000.

In the fall, there are plans in the works for another Dining in the Dark at local favourite 48 High restaurant in Grand Falls-Windsor.

We’re always happy to welcome new fundraisers. Every year people find creative ways to help the CNIB through Facebook online auctions, bake sales, casual day ‘toonie’ drives, and hosting BBQs and casino nights, to name a few. If you have an idea for a fundraiser please contact Emily Cardwell at 709-754-1180 x 5807, 1-800-563-2642, or emily.cardwell@cnib.ca .

Guide Dogs and Legislation

By Trevor Freeborn, CNIB Volunteer

CNIB-NL Board member, Philip Strong and his guide dog, Wonka
We know from historical depictions that the first guide dogs were used as service animals at least 500 years in the past. Beyond the occasional historical reference, however, little is known about the practice until the late 1700s when the "Less Quinze-Vingts" Hospital for the Blind in Paris began the first known organized training of guide dogs. In the modern era, like many of the innovations and organizations developed to assist people with vision loss, increased use of guide dogs came about in response to the many soldiers who were injured during the First World War. In 1916, Dr. Gerhard Stalling opened the first known guide dog school in Oldenburg, Germany. The program’s success led to the creation of offshoot schools in several cities that were training hundreds of dogs a year for people with vision loss in countries throughout Europe, North America, and Asia. The training of dogs as service animals was gradually replicated in other countries with the United States opening its first school in 1939. The inaugural Canadian program was developed in the early 1980s and today the Canadian Association of Guide & Assistance Dog Schools counts nine organizations amongst its membership.

Service animals can have an enormously positive impact on their owners, allowing them to live fuller and more active lives. Their usage is not limited to vision loss: service animals also serve people with cerebral palsy, autism, seizures and diabetes, among others.  As a tool or accommodation for people with disabilities or who are chronically ill, they are somewhat unique because they are living beings and therefore require more consideration than, for example, a white cane. As guide dogs become more common, countries around the world have developed legislation to support their usage. Laws governing where guide dogs can accompany their owners vary from one country to the next; however some countries, such as Canada, have very inclusive legislation. In Newfoundland and Labrador, according to the “Service AnimalAct”, a guide dog user is entitled to any “accommodation, services, or facilities available in a place to which the public is customarily admitted”. Despite the legislation in place, people accompanied by a guide dog continue to face some issues accessing services available to the general public.

It’s been said that one person’s rights end where someone else’s begin.  A well-functioning society is a balancing act that can, at times, be precarious. Our society is also a mixture of people at different stages of life and with varying abilities that require consideration and accommodation. Frequently, this accommodation will come in the form of infrastructure and assistive devices.  Guide dogs are unique in that they are living, intelligent beings providing a vital service and, in Newfoundland and Labrador, wherever the general public is welcome, they are too.

The TechTalk Corner

By Yong Ko, CNIB Volunteer

Understanding the Argus II Prosthesis as a Treatment for Retinitis Pigmentosa

Retinitis Pigmentosa (RP) is a hereditary retinal disorder caused by the degeneration of photoreceptors in the retina. People diagnosed with RP lose night vision at an early stage and progressively lose peripheral and central vision later in their lives.

Different approaches such as stem cell therapy have been taken to help restore functional vision that was lost due to RP. Another treatment involves implanting a prosthesis in the retina to provide electrical stimulation to the brain via electrodes. One such prosthesis, called Argus II, was approved by the U.S. FDA, Europe, and Health Canada, and has since been implanted in more than 100 individuals globally.

Below are recent updates about Argus II and its potential application as a treatment for people diagnosed with age-related macular degeneration (AMD):

  • 5-year test results, evaluating the Argus II Retinal Prosthesis System, were released at the 39th Annual Macula Society Meeting in February 2016. Test participants who received an implant of the Argus II Retinal Prosthesis System were evaluated with regard to their visual function when the system was on versus off. According to Ophthalmology Innovation Summit, participants performed better with the system on and the benefits of the system were largely maintained at 5 years after implantation.
  • 81% of test participants performed better with the system on when they were tested to locate and touch a high-contrast target
  • 50% of test participants performed better with the system on when their ability to determine the direction of a high-contrast target was evaluated
  • 38% of test participants performed better with the system on when they were asked to distinguish the orientation of black and white bars of different widths

Both 1-year and 3-year results regarding the visual function and risk assessment after implantation can be found here: http://www.aaojournal.org/pb/assets/raw/Health%20Advance/journals/ophtha/ophtha_8651.pdf

  • In addition to Retinitis Pigmentosa, Argus II is now undergoing a clinical trial in order to assess its efficacy in restoring functional vision for patients diagnosed with dry AMD at the Manchester Royal Eye Hospital in U.K. According to clinicaltrials.gov (https://clinicaltrials.gov/ct2/show/NCT02227498), the study is expected to be completed in June 2019. The progress seems to be worth following as AMD is one of the leading causes of severe vision loss in the developed world.

Canadian Council of the Blind (CCB) Updates

By Trevor Freeborn, CNIB Volunteer

New Canadian Council of the Blind Chapter – Lewisporte and Area Division

The new Canadian Council of the Blind (CCB) Lewisporte and Area Chapter is looking for members! The CCB is made up mostly of people with vision loss who share common interests such as sports and recreation, belief in ability not disability, and a desire to support others based on shared experience. CCB promotes increased accessibility, equality of opportunity and quality of life for people with vision loss. The group is open to anyone with vision loss living in the areas between Norris Arm and Terra Nova Park. The group is also looking for volunteers without vision loss to provide sighted assistance during meetings and activities. Meetings will be held in Lewisporte with one business meeting a month, and one fun activity a month.

For more information, please contact Shane Wheeler at (709) 541-3243 or shanewheeler1@bellaliant.net

CCB Announcements and Summer Activities:

  • The CCB Lewisporte and Area Chapter would like to pass along congratulations to the organizers of the CCB Atlantic Sports Weekend in Dartmouth, May 20-23, 2016. It was a well-organized weekend with 11 participants from NL. Congratulations to all of the participants, especially to third-place winner of ring toss and table pulling from the CCB Lewisporte & Area CCB Chapter, Lisa Cakes.
  • The CCB E. A. Baker Chapter from St. John's would like to congratulate their members from the CCB Atlantic Sports Weekend:
    • Fred Williams from Bay Roberts came first at the Talent Show. Maurice Colbert from St. John's came third
    • The CCB E. A. Baker Chapter came first at Table Bowling
    • The highest average for a totally blind female, 51 & over, went to Donna Penney from Burgoynes Cove
    • The highest overall team went to the CCB E. A. Baker Chapter
  • On May 28, E. A. Baker Chapter CCB members will participated in a nature walk where a person who conducts bird watching tours demonstrated how we can enjoy the hobby of bird watching by using our ears instead of our eyes
  • On June 2–4, CCB will host a booth at Sportfest 2016 at the PowerPlex in St. John’s NL.  Volunteers will demonstrate the sport of goalball to elementary school students and the public 
  • On June 4, the Humber Valley-Bay of Islands CCB Chapter is having its year-end dinner
  • The CCB, with the assistance of CNIB, work with an independent group to conduct a week-long summer camp for adults with vision loss at the Lion Max Simms Memorial Camp in Bishop’s Falls in August of each year. This year the camp will run from August 14-20

Other recreation opportunities the CCB hope to offer on a regular basis over the summer are croquet, bocce and golf.  Activities vary by chapter. If you are interested in finding out more about the CCB or where and when local chapters meet, contact Nadine Green – President, NL Division at (709) 745-6797, nadinegreen87@hotmail.com, or ccbnfld@gmail.com, or Facebook:  Canadian Council of the Blind, Eastern NL Chapter. 

Hadley Institute for the Blind and Visually Impaired Updates

By Yong Ko, CNIB Volunteer

Hadley has updated its brand and changed its name from ‘Hadley School for the Blind’ to ‘Hadley Institute for the Blind and Visually Impaired’. Its new name reflects Hadley’s dedication to the education of people with visual impairment more comprehensively, as it has been providing life-long education to a wide range of audiences such as veterans, high school students and entrepreneurs since the 1920s. Though Hadley has rebranded recently, its long-standing mission to help promote the independent living of people with vision loss is still intact. People experiencing low vision (or their family members) can utilize a variety of resources to educate themselves about Braille, new technologies and quick tips to reduce the impact of vision loss.
Below is a list of new courses / modules open for enrollment:

  • Container Gardening
  • Introduction to Braille, UEB Edition
  • Contracted Braille, UEB Edition
  • Introduction to Low Vision and Adults
  • Transitioning from School Years to Adult Services

Recent seminars include:

  • Low Vision Focus Presents: The Vision Rehabilitation Therapist: Your Advocate for Independence
  • iFocus 14: Tips on Using the Vision Accessibility Features in iOS
  • Braille Exchange: Have Fun with Braille Drawings
  • Geography: Talking Travel: So You Think You Know Canada, Eh?
  • Low Vision Focus Presents: Vision Loss Support Groups Part 1
  • Assistive Technology Update
  • Elements of Good Health

To receive weekly updates on Hadley seminars and courses, you can subscribe to the eConnect newsletter by visiting hadley.edu/eNewsletter.asp

For more information, please visit hadley.edu or lowvisionfocus.org/LVF_videos.asp (for Hadley's Low Vision Quick Tip videos)

Or contact Dinah Durnford (dinah.durnford@cnib.ca) at CNIB Corner Brook office at 709-639-9167 ext. 12 or 1-800-334-2642 ext. 5850

Classifieds Section of CNIB-NL Newsletter

Do you have any independent living aids or technology you would like to sell or give away to a fellow newsletter reader, or would you like to put up a wanted ad for one? If so, send us a request by mail at 70 The Boulevard, A1A 1K2, St. John’s, fax at (709) 754 2018  or email at lynsey.soper@cnib.ca.

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