Guest Post: Community Advocacy Training, National Dog Guide Coalition and ARCH CRPD-OP

Hi Everyone

We are doing this last push to invite you all to sign up for this exciting free on-line training through ARCH Disability Law Centre. The course is 4 hours one Saturday a month for four months starting last Sat in March. The National Coalition is one of the partners in developing the training with ARCH. The purpose is to develop advocacy skills and a strong knowledge about how implementing the Convention on the Rights of Persons with Disabilities can and will impact you locally. Its also about developing relationships and building a network of people to work with. There are video links below this email that will explain more.  
 
What does that mean to you in your day to day and why is it important for you to consider taking this course?

1) Our Human Rights in Canada are based on us, the individual. Not a charity, not a business, not an agency, just us, the individual, we have standing in Human Rights law. 
2) As a result, everything that is being decided on our behalf by Governments Local, Provincial and Federal, including funding to organizations that provide services on our behalf, fundraise on our behalf and sit at the decision making tables, impact us the individual, every day. 
3) Nothing about us, without us, gets lost in translation when those that are invited to sit at the decision making tables are not us. They usually have no constituency in which to get advice and direction from and make sweeping decisions about us without us.    
3) How involved do we want to be in making decisions that impact ourselves and each other on a daily basis? What knowledge do we need and how do we get it?  Why spend 16 hours of my life over 4 months to take this course? 
4) One example of why this is important, is when a simple process of developing training methods and standards for PTS Dogs for Veterans, was highjacked. 
5) From early 2015 to April of 2017, two years of secret meetings and development by many unelected, non representative groups of people with no connection to us, developed standards that if adopted by the Federal Government, would have taken away our individual rights to choose and decide where we go to get our dogs and create a mandatory National Registry.    
6) This National Registry of us under a certification model included people we don’t know inspecting our homes, going through our financials and taking our dogs away from us to test them. Then they would decide if they would certify our dogs and they would be allowed to work with us in Canada. Thinking back it is as ridiculous sounding as it was almost three years ago. But it happened and the Federal Government funded it. This was the misplaced thinking of people at the decision table secretly deciding what was best for us. .
7) That is when our Coalition began. We said no and through all of your hard fought advocacy, shut it all down by March 2018. 
8) Unfortunately the almost half a million dollars that was spent, failed to produce any training methods and standards for PTS dogs for Veterans. That is what happens when people sit at tables without being responsible back to the people whom decisions impact and move their own agenda’s.    
9) This is brewing to start up again, standards accreditation and certification Federally. The same people who started working on that standards fiasco mess since 2009 and almost pulled it off in 2017, are still committed to having it happen and we are constantly responding to their push to do it all over again.
10) why take this training? Because we need more of us to have the knowledge, capacity and skills to continue to protect our hard earned rights and push back when decisions are being made that are eroding them. The more understanding each of us have, we can catch the game way ahead of 2 years of development and stop it before it starts. That is why many of us worked with ARCH to develop this training and to continue with more.    

As people who have already gone through round one of the standards debacle, I encourage you all to consider learning and preparing for no doubt another round that is coming our way in the next year, not to mention the provincial issues we are already dealing with. Understanding the legal protections of our Rights in the Convention will allow us, individually and together to articulate why these types of ideas are backwards thinking and do not promote a rights based one. We need to be able to argue from a position of strength and knowledge and we all deserve to have that knowledge. 

Thanks everyone. The videos and further information are next with the information in French following.

Yvonne Peters 
Heather Walkus,
National Coalition of People who use Guide and Service Dogs in Canada 
email: info@hooh.ca 
Phone: 250-499-0780     

Hands Off Our Harnesses, Hands Off Our Hounds   H.O.O.H

From: ARCH Staff 1 <archsta1@lao.on.ca>

Hi Heather!
I hope you are doing well.
 
As promised, I’m writing to let you know that we have the course dates confirmed.
 
OP Lab for OP Champions
·        March 28, 12-4 PM (EST)
·        April 25, 12-4 PM (EST)
·        May 30, 12-4 PM (EST)
·        June 27, 12-4 PM (EST)
 
OP Lab for Legal Experts
·        April 21, 2-4 PM (EST)
·        May 19, 2-4 PM (EST)
·        June 16, 2-4 PM (EST)
 
Joint Meeting for OP Champions and OP Legal Experts
·        September 15, 1-2 PM (EST)
 
We will be accepting applications until Friday, February 14, 2020, at 5:00 PM (EST). The information has been updated in our website:www.archdisabilitylaw.ca/initiatives/advancing-the-un-crpd/op-lab
 
Please share this as widely as possible, and as always let me know if you have any questions.
 
Thank you and have a great day,
 
Mariana Versiani
Communications and Outreach Coordinator
OP Lab Project Coordinator
 
416-482-8255, extension 2221
 
http://www.archdisabilitylaw.ca
 
Facebook @ARCHDisabilityLawCentre
Twitter @ARCHDisability
 
Please consider the environment before printing this email.
 

As a reminder, here’s the promotional information for the project:
 
1.   All information about ARCH’s initiative on the CRPD, and the OP Lab: https://archdisabilitylaw.ca/initiatives/advancing-the-un-crpd/op-lab/
 
2.   People who want to participate in the OP Lab will need to submit anapplication here: https://www.surveygizmo.com/s3/5281955/OP-LAB-Application-Form
 
3.   See attached a one-pager about the OP Lab, in English and in French.
 
4.   Primer video about the CRPD, the Optional Protocol and the OP Lab: www.youtube.com/channel/UCBwozUKpvREOrGGzpMHTXCw
 
5.   Factsheet about the CRPD and the Optional Protocol:https://archdisabilitylaw.ca/resource/factsheet-the-crpd-and-the-optional-protocol/
 
6.   ARCH Alert article about the OP Lab: https://archdisabilitylaw.ca/resources/arch-alerts/
 
All of these were shared through ARCH’s social media:
·        Facebook@ARCHdisabilityLawCentre
·        Twitter @archdisabilitylaw
·        OP LAB activities, including networking, will be encouraged on social media through #OPlab.
 
Here are the links in French:
·        Website/application form:https://archdisabilitylaw.ca/fr/la-mise-en-oeuvre-de-la-cdph-des-nations-unies/op-lab-apprendre-partager-agir/
·        Youtube video primer:https://www.youtube.com/watch?v=kQSU5WwWZdU&t=12s
·        Factsheet:https://archdisabilitylaw.ca/fr/resource/fiche-dinformation-la-cdph-et-le-protocole-facultatif/
·        ARCH Alert article:https://archdisabilitylaw.ca/arch_alert/arch-alert-volume-20-issue-4/#lancement-op-lab
 
Thank you again,
 
Mariana Versiani
Communications and Outreach Coordinator
OP Lab Project Coordinator
 
416-482-8255, extension 2221
 
http://www.archdisabilitylaw.ca
 
Facebook @ARCHDisabilityLawCentre
Twitter @ARCHDisability
 
Please consider the environment before printing this email.
 
Demain nous lancerons l’OP Lab: apprendre, partager, agir!, dans le cadre des célébrations de la Journée internationale des personnes handicapées.
 
Aidez-nous à promouvoir ce projet dans vos réseaux et médias sociaux!
 
Le lancement comprendra :
·        un courriel que nous enverrons demain avec des informations sur l’OP Lab
·        une vidéo sur la CDPH, le Protocole facultatif et l’OP Lab dans la chaîne YouTube d’ARCH :www.youtube.com/channel/UCBwozUKpvREOrGGzpMHTXCw
·        un article sur l’OP Lab dans l’ARCH Alerte du 3 décembre : https://archdisabilitylaw.ca/resources/arch-alerts/
·        une Fiche d’information sur la CDPH et le Protocole facultatif :https://archdisabilitylaw.ca/fr/resource/fiche-dinformation-la-cdph-et-le-protocole-facultatif/
 
Ceux-ci seront tous partagés demain via les médias sociaux d’ARCH :
·        Facebook @ARCHdisabilityLawCentre
·        Twitter @archdisabilitylaw
 
Toutes les activités d’OP Lab, notamment le réseautage, seront encouragées sur les médias sociaux à travers#OPlab.
 
Les personnes souhaitant participer à l’OP LAB doivent s’inscrire et nous souhaitons encourager autant de personnes que possible à s’inscrire. Vous trouverez le lien vers le formulaire d’inscription sur le site Web d’ARCH: www.archdisabilitylaw.ca/fr  
 
Cordialement,
 
 
Mariana Versiani
Communications and Outreach Coordinator
 
<image001.png>
1. ARCH Disability Law Centre
http://www.archdisabilitylaw.ca
 
55 University Avenue, 15th floor
Toronto, ON, M5J 2H7
 
Tel:   416-482-8255 or 1-866-482-2724 (extension 2221)
TTY: 416-482-1254 or 1-866-482-2728
Fax:  416-482-2981 or 1-866-881-2723
 
Facebook @ARCHDisabilityLawCentre
Twitter @ARCHDisability
 
ARCH’s office is physically accessible.  ARCH is a scent-free environment. We try our best to keep our office and events free of scents and fragrances.  These may cause health problems for staff and visitors. We ask for your cooperation by not wearing perfumes, aftershave, lotions or any other scented products when visiting us.
 
The information contained in this email may be legally privileged and confidential.  If you are not the intended recipient, any disclosure, copying or distribution of this material is strictly prohibited.  If you have received this email in error, please immediately destroy this message and kindly notify our office. 
 
Please consider the environment before printing this email.
 

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Guest Post: Braille Literacy Canada Newsletter, November 30, 2018

November 2018 Newsletter

In This Issue

  1. Message from the President (Natalie Martiniello, BLC President)
  2. Braille is …
  3. Helping Santa Deliver Braille Letters: A T-Base Tradition (Cassandra Peterson)
  4. Report on the 2018 CNIB Braille Conference (Kim Kilpatrick, BLC Secretary)
  5. CELA Braille Services Update (Lindsay Tyler, Senior Manager, CELA)
  6. Titres en impression relief et en braille français (Rebecca Blaevoet (BLC Director) and Emmanuel Blaevoet)
  7. Braille Transcription Free of Charge!(CNIB Brailleroom)
  8. UEB Christmas Trees? (Jen Goulden, Past President)
  9. Braille and Technology Together: Braille Screen Input in iOS (Ashley Eve Shaw Galbraith)
  10. Social Media News Links

Message from the President

By Natalie Martiniello, BLC President

Dear BLC friends,

“How wonderful it is that nobody need wait a single moment before starting to improve the world.”

This is a quote by Anne Frank that often comes to mind when I observe a gesture – even a small one – that has an impact on someone else. When a hundred small gestures take place at once, then each one contributes to the end result – which is positive change of some kind. And surprisingly, sometimes there are trickle down effects that end up having positive impacts in ways one could not have imagined.

I am a firm believer that few things are “impossible” if you dream big enough, remain committed, and collaborate with the talented and equally passionate people around you.

Just over four months ago, BLC embarked upon a quite ambitious goal for a small volunteer-run organization – Raise $6,500 by November 30th, and a private donor would match every dollar. With this amount in hand, we would have enough to establish a permanent endowment to offer the Edie Mourre scholarship on an annual basis to those pursuing careers as braille transcribers and educators.

Today, as that campaign draws to a close, we have not only met that goal, but have surpassed it. This is a reflection of what is possible when we come together. With $14,000, the Edie Mourre fund will be self-sustaining for the years to come. What a wonderful legacy to Edie Mourre who committed so much of her time to the braille community, and what a wonderful example of how many small gestures could lead to a lasting wave!

The BLC board would like to thank every individual, both within and outside the organization, who supported this initiative in different ways. We would also like to thank two of our corporate members – T-Base Communications for donating $300 and Crawford Technologies for donating $2,500, ensuring that we’d speed through that finish line with a great big triple dot six!

I mentioned trickle down effects. In addition to raising funds, the campaign served as a powerful public education tool. The events held as a consequence educated members of the general public who, beforehand, new little or absolutely nothing at all about blindness and braille. After our storytelling fundraiser in Montreal (performed by our fabulous board Secretary, Kim Kilpatrick) we received a letter from someone who had attended our show and said that they had learned so much about braille, equal access and literacy for people who are blind. These moments are great triumphs – because every time we tackle misconceptions, we are chipping away at the inaccuracies that may exist about blindness, and which sometimes lead to questions like “is braille really important, anyway?” A few more people out there can now answer – Yes, of course it is! Right alongside us.

So, as we approach the holidays, the BLC board would like to thank all of you for your commitment and dedication – and may this serve as a reminder of what is possible when we come together!

You will find many treasures in the coming pages. Among them, T-Base tells us about their partnership with Santa himself and how blind children can receive a letter in braille from Santa this holiday season. Tactile Vision Graphics shares with us their French braille resources for children. Jen Goulden, Past President, tackles another transcription conundrum. Kim Kilpatrick, Secretary, gives us a recap of the 2018 CNIB Braille Conference. Over the past month, we’ve asked members to tell us what words and thoughts come to mind when they hear the word “braille”. The collection of responses is found in this issue, and the power of literacy rings true in every word!

Finally, remember that BLC runs on a calendar year from January 1st to December 31st, which means it is soon time to renew your membership. To learn more about membership options (annual, lifetime and corporate) and member benefits, visit our website at www.brailleliteracycanada.ca or write to us at info@blc-lbc.ca. Members who are due for renewal can expect to receive an invoice from PayPal in the coming days to make the process easy and painless.

From the entire BLC board to you, happy holidays! Here’s to another year of endless possibilities.

Yours truly,
Natalie Martiniello
President, Braille Literacy Canada

Braille is …

We’ve asked BLC members and friends to complete the sentence “braille is…”. Here is what they had to say!

Braille is…

…Independence (Tammy, braille reader)

…An excellent tool (Walter, Low Vision Therapist/Researcher)

…Fun to read in the dark under the covers so I don’t get cold! (Steph, adult braille learner)

…A necessity (Chantal, braille reader)

…rough! (Albert, blind technology trainer)

…magical (Kim, braille reader)

…A true “feeling” of beauty (Veena, Low Vision Therapist)

…Literacy (Elizabeth, braille reader)

…fun! I like playing braille bingo and braille memory games! (Ainsley, Grade 3)

…The best way to teach and learn!

…Memorizing

…The best way to help me learn

…Useful on elevators, money and medication (Ahmad, ESL student)

…Reading, writing and math

…Information

…Entertainment

…Helping (Santiago, ESL Student)

…The best way for blind people to study

…An international language for blind people

…Like a secret code! (I think you’re smarter if you can read braille, because not everyone on the street can read Braille!) (Fatlum, ESL student)

…the gateway to Middle Earth, Narnia, Hogwarts, Regency England, Green Gables … and so much more! (Jen, lifelong braille reader: so many books, so little time!)

…a lifetime of memories of storybooks, campfires, bedtimes, make-believing and library adventures (Natalie, lifelong braille reader)

…what print is to you: a door and a window to everything!

…B – Believing
R – Reaching
A – Achieving
I – Imagining
L – Limitless
L – Learning
E – Empowering

Helping Santa Deliver Braille Letters: A T-Base Tradition

By Cassandra Peterson

Editor’s Note: T-Base is a corporate member of BLC and Jessica Blouin sits on the BLC board as our T-Base representative. This article is reprinted with permission and can be found on the T-Base website at https://www.tbase.com/helping-santa-deliver-braille-letters-a-t-base-tradition/?fbclid=IwAR3KkhcZpniRS_3fqjkYemW5Th_av0GfFEi5oqr5LTKjvxAQe30UvpJFpo4.

Cassie Peterson, Marketing Coordinator at T-Base Communications, sat down with Jessica Blouin, Manager of Transcription Services, to talk about an initiative near and dear to our hearts here at T-Base: the Santa Letter Program. Every year we help Santa deliver braille letters to children who are blind or have low vision.

C: How long has T-Base been participating in the Santa Letter Program?

J: T-Base has been participating in the Santa Letter Program for over a decade.

C: Please tell us about the process.

J: Every year in the fall we receive a call from Kris Kringle himself. He tells us how many children he needs to respond to in braille, plus how many of those need a response in English and how many need a response in French. Santa provides us with his print response to each child’s letter, and then our Transcription team gets to work! As is the case with all documents we transcribe into braille (or other alternate formats), Santa’s letters go through rigorous quality assurance checks to ensure nothing is amiss and that the transcribed documents meet Santa’s high expectations. Finally, we help pack up the letters for Santa to deliver.

C: By which date should children send their letter to Santa?

J: Children should send their letters to Santa by the 10th of December. (If you send one after, he might not have enough time to respond before the big day!)

C: What address should children send their letters to?

J: Children should send their letters to Santa Claus at his North Pole address:

Santa Claus
North Pole HOH OHO
CANADA

C: Why is it important that T-Base participates in this program every year?

J: For children, receiving a letter from Santa Claus is a great joy during the holiday season, and it is one all children should have the opportunity to experience. I do remember how happy I was as a child receiving a letter back from Santa. Collaborating with Santa on this project is important to T-Base because we get to help ensure children who are blind or have low vision experience the same joy their sighted family members and friends experience. This is such a wonderful program.

C: What feedback have you received on this program?

J: T-Base has always received positive feedback on the Santa Letter Program. We have heard from both parents and teachers that children are always so happy and thankful to receive a braille letter from Santa in the mail.

C: In what other ways is T-Base committed to ensuring that people who are blind or low vision have access to information?

J: At T-Base, we believe that equal access to information is key to literacy and independent living, regardless of whether that information is in a simple letter from Santa Claus or a complex math textbook. Everyone has the same rights, and we are committed to ensuring that organizations have the resources they need to provide their customers who are blind or low vision with equal access to information. We produce statements, documents and textbooks in a wide range of alternate formats: accessible PDF, e-Text, audio, braille and reflowed large print. We also give $2,000 every year to one or two post-secondary students who are blind or low vision through the T-Base-AEBC Scholarship Program (in support of an accessible education).

C: What are some other holiday traditions at T-Base?

J: Typically, we host a potluck lunch at the office and Secret Santa gift exchange. This year we will have an ugly holiday sweater fashion show.

C: Wonderful! Thanks for letting our readers know about the program and T-Base’s involvement in it. Something else our readers might be interested in hearing about is your favourite memory from a T-Base holiday gathering.

J: My favourite memory from a T-Base holiday gathering is when Scott Bagshaw, Production Manager, dressed up as Santa Claus, sang karaoke and handed out candy canes to the team.

C: Before we wrap up, what is on your wish list this holiday season?

J: A puppy! Besides that, I know everyone here at T-Base wishes our readers a safe and happy holiday.

Report on the 2018 CNIB Braille Conference

By Kim Kilpatrick, BLC Secretary

The 2018 Braille conference took place for the first time at the Ontario Science Centre on October 18 and 19, 2018.

This was a wonderful venue and it was nice to have the braille conference in a public place where the many visitors saw people moving around with canes, guide dogs, and lots of braille in hand.

As usual, there were many workshops on a multitude of topics and several BLC board members presented on research, braille and technology, and more. Among these talks Past-President Jen Goulden and I (BLC Secretary) presented on the use of refreshable braille with iOS, President Natalie Martiniello presented the preliminary results from her qualitative study on the experiences of older adults who have learned braille, and director Rebecca Blaevoet presented on Tactile Vision Graphics. BLC board members also had the opportunity to circulate our new print-braille BLC bookmarks – available upon request!

The AMI Audio show Kelly and Companybroadcasted live from the conference on both days and several BLC members were featured on this show.

As usual, one highlight for me was hearing the winners of the braille creative writing contest for students in elementary and high schools from across Canada.

I was excited to touch for the first time, the first ever multi-line braille display (The Canute) which may be on the market within the next year or so.

As usual, it was wonderful and heart warming to be in a room filled with others who love braille as much as we all do.

CELA Braille Services Update

By Lindsay Tyler, Senior Manager, CELA

Braille readers who receive books from the Centre for Equitable Library Access (CELA) are receiving books in a new way. Since April 2018, we emboss a fresh copy of each braille book we send. This procedure allows us to offer as many copies of each book as needed, so readers do not need to wait for others to return a book before they can receive it. Each copy we send is fresh and crisp.

Instead of sending braille books in a cloth bag, we send them in a cardboard box which can be recycled along with the book. Readers may choose to keep books, if they prefer.

Printbraille books (children’s picture books with braille added) are the exception to this new system; readers must continue to return them.

The formatting of the books is different, too. Newly transcribed books are formatted as a single volume with continuous page numbers. The title will appear in the header as well as at the beginning of the book. Previously transcribed books are split into parts of about 80 pages each.

Looking forward, CELA staff are planning a new website that will bring even more books to Canadian braille readers. The new website will bring together Bookshare’s braille offerings with CELA’s in a single, accessible site.

The new year will also bring the opportunity to exchange books with libraries for people with print disabilities in the United States and Europe, thanks to their recent ratifications of the Marrakesh Treaty. The goal of the Marrakesh Treaty is to remove barriers so that organizations like CELA can share accessible reading materials with other similar organizations in countries who have signed the Treaty.

As we work to improve our services and offer you greater access to books and information, we hope you will let us know how we are doing. Visit our website at http://www.celalibrary.ca, email us at help@celalibrary.ca or call 1-855-655-2273.

Those who are interested can also contact CELA to subscribe to the hard copy braille version of the BLC newsletter.

Titres en impression relief et en braille français

By Rebecca Blaevoet (BLC Director) and Emmanuel Blaevoet

Note: We’ve received several requests lately for information on where to purchase french print-braille books. In this article, Rebecca and Emmanuel from Tactile Vision Graphics describe their French collection. We will include an English translation of this article in the January issue.

Tactile Vision Graphics Inc. a toujours eu le but de produire toutes nos ressources et en Anglais et en Français. Notre entreprise est de très petite taille, donc nous n’avons pas encore été capables de produire en Français la totalité des titres qui existent en Anglais. Il nous a fallu faire des choix au départ. Il reste encore du travail.

Pour commencer, il nous a semblé que le domaine le plus important et celui par où il fallait commencer était les ressources pour le développement des concepts: la littératie et la numératie.

Chaque livre contient un peu de texte, en braille intégral, évidemment, et une image correspondante que les enfants peuvent toucher, (et même colorier) et discuter.

Les images tactiles enseignent des concepts importants:

  • Les formes de bases;
  • Accorder une image avec un mot qui le décrit;
  • L’orientation spatiale;
  • La directionalité;
  • La taille relative;
  • Le commencement de l’abstraction, qui est une connaissance critique pour le développement de l’enfant et la préparation à sa vie d’adulte;
  • Une représentation des choses qui sont plus difficiles à toucher en réalité (une maison par exemple)

Ainsi nous avons en catalogue un série de livres tactiles pour enfants, parmi eux « Mon Abécédaire », « Mon Livre des Chiffres » et « Discret Comme Une Souris: un Petit Livre des Similarités »

Au delà notre collection de livres pour enfants, nous avons aussi plusieurs cartes de vœux pour toutes les occasions et des livres à colorier avec les titres en impression relief et en braille français.

Nous vous invitons à visiter notre site web, chercher le “shop” et découvrir l’étendue de nos publications.

Vous pouvez aussi bien sûr nous appeler pour poser des questions ou pour placer une commande au (226) 221-8849

http://www.tactilevisiongraphics.com

Braille Transcription Free of Charge!

By CNIB Brailleroom

We’re all familiar with the adage “Nothing in life is free”; but the CNIB Brailleroom can braille just about anything, free of charge, for CNIB clients and their families.

  • Letters and greeting cards
  • Household labels
  • Music scores
  • Course materials
  • Prescription/medical information

Note that this is not an exhaustive list.

Email your text in a Word document to: brailleroom@cnib.ca

Mail or drop off your printed materials:

CNIB Brailleroom (Room 104)
1929 Bayview Avenue, Toronto, ON M4G 3E8

UEB Christmas Trees?

By Jen Goulden, Past President

It is that time of year again, and it really is beginning to look a lot like Christmas where I live. You might be wondering how I could possibly make a connection between Christmas trees and UEB, but whether you prefer to decorate a pine, spruce or Douglas fir, they are all conifers … or coniferous.

So here’s the question for transcribers: Are they con-i-fer-ous or co-ni-fer-ous trees?

Section 10.6.1 of the UEB rule book states the following: Use the lower groupsign for “be”, “con” or “dis” when the letters it represents form the first syllable of a word (such as concept or control … or contraction). According to the Merriam-Webster online dictionary the first syllable of both conifer and coniferous is “co”. This means that the “con” contraction cannot be used.

I think the main cause of the confusion is that DBT does use “con” in these words. Ironically, there was no “con” in conifer or coniferous before UEB either. This is just another example showing that not much has changed in literary braille with the update to UEB.

Of course, we could just avoid the co-nun-drum altogether by simply calling them evergreens!

Braille and Technology Together: Braille Screen Input in iOS

By Ashley Eve Shaw Galbraith

People often ask me if braille skills are still useful, given the recent development of technologically advanced accessibility solutions. There are many reasons why braille is still necessary, but some of my favorite examples are the ways in which braille and technology intersect. Braille screen input, for instance, provides touch screen users with a typing method that is both fast and efficient.

For users of Apple’s iOS, Braille Screen Input has been a standard feature of the screen reader VoiceOver for several years now. The option allows users to enter text by touching the screen with the combination of fingers associated with each Braille character, in either contracted or uncontracted Braille. Accessed through the Voiceover Rotor in any text field, this option allows Braille users to type much faster than with the touch screen’s qwerty keyboard. It also allows for a greater degree of discretion than the use of text dictation, and makes it possible to enter long passwords with ease and privacy. Since Unified English Braille is an available translation table, I’ve also been able to get a lot of practice with UEB whenever I use my iPhone.

Learning to use touch screen Braille takes a bit of initial effort. The user holds the device in landscape mode, either on a flat surface or with the screen facing outward. Touching and holding fingers on the screen will activate Explore Mode, and the device will report the corresponding combination of dots from the Braille cell. A single finger swipe to the right enters a space, a single swipe to the left erases the previous character, a two finger swipe to the left erases the previous word, and a two finger swipe to the right starts a new line. Swiping up and down after completing a word provides any alternative suggestions. After a bit of practice, the user will be able to type quickly and smoothly.

Before Braille screen input was available, I was stuck either carrying around a Bluetooth keyboard, or typing relatively slowly on the touch screen qwerty keyboard. Now I use Braille to type text messages, emails, web addresses and phone numbers. This is just one example of Braille’s versatility and efficiency when combined with technology.

Social Media News Links

Social Media Links

Here are just some of the gems posted on BLC social media platforms since the last issue: Follow us on twitter or like us on Facebook for more!

Time to celebrate – the United States ratifies the Marrakesh Treaty! https://benetech.org/united-states-ratifies-marrakesh-treaty/

Brick-A-Braille teaching system – available for testing: https://robotics.benedettelli.com/braille/?fbclid=IwAR3V7N-aUd-rKLS9NOBqO5vfW8NjDMM_vsPSg8c4pE9BX6WutB1Z9BHXQYA#download

A story about introducing braille to sighted children: https://www.wvnews.com/prestoncountynews/news/read-aloud-program-incorporates-fun-into-reading/article_d9588de6-f61d-5cdd-9bb3-5438a6cb1501.html?fbclid=IwAR0syl8PYUrtygJxvm-a4R3eZtbWbRuY1VNDREVLy2YgrOqucP2ghxCkvWI

Custom-made braille cards with your personalized messages – great for the holidays! https://www.sensorysun.org/blog/send-braille-cards/?fbclid=IwAR1j9358r3brESYoBBIjO7bbGF522Zb6ozirQDSqSpFeAi07y5Zmz6vxExI

Is braille still relevant in the 21st century workplace? spoiler alert Like print, the answer is… YES!! https://www.afb.org/blog/careerconnect-blog/is-braille-useful-on-the-job/12?fbclid=IwAR3uFG1xExtQzLj4nCUZjN0PBlxGZe01G-AMRbQzB7YI4fNvhF0wmtlsgbQ

Tips for teaching braille to students with decreased tactile sensitivity: http://www.pathstoliteracy.org/blog/12-more-ideas-teaching-braille-students-decreased-tactile-sensitivity?fbclid=IwAR0XO6_SSqFDL9510HlCjG5UMStxwLA9AvM9GUaeXQp3HC1P3x33vmCOg4s

French alphabet print-braille book available through Tactile Vision Graphics: http://tactilevisiongraphics.com/product/livre-en-braille-mon-abcdaire/?fbclid=IwAR2RMKDsHCjPoQhS1a5mhph3U-bzkVWBJhcAbOWiU3jzMSc23AGblC6rpU0

The SENSEsational Alphabet Book is back in stock at Seedlings! This popular book for ages 0-5 features the English alphabet in print, braille and sign language. Kids can press the buttons to hear each letter, as well as feel and smell pictures of items starting with each letter: http://www.seedlings.org/details.php?id=1353&cat=0&search=SENSEsational&fbclid=IwAR0c0uwhFaej9mUPV0ShdVyWb9T_yqa6NNivyhnhD5Or4L5UWtOEAOIUdd8

The Bank of Canada has announced that it will begin to phase out the bank note reader program. It has been determined “that there are more modern devices that can be used to denominate bank notes”. For example, did you know that all paper money in Canada has tactile markings to help blind and LowVision people identify each bill? For more information, visit: https://cnib.ca/en/news/bank-note-reader-program-and-recall?region=qc&fbclid=IwAR3B5sHXRMs28PioUSfxZ8YR1feDLF3p_tldayH_yqyHh0UlC15VhMxZ-8A

A collection of high-interest short stories from National Braille Press for adults who are learning uncontracted braille! Visit: http://www.pathstoliteracy.org/resources/short-stories-adults-learning-uncontracted-ueb?fbclid=IwAR2-MbIffsCryGdmfve9WQ-SAD1Tq1MUEC1UfnHw5Z7pl27V79MDjm81xT0


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CCB National Newsletter, Visions, October 2018

 

 

 

 

 

 

VISIONS

Canadian Council of the Blind Newsletter

 

 

 

 

 

 

 

 

October 2018

 

 

 

“A lack of sight is not a lack of vision”

 

 

 

 

President’s Message++

1Louise Gillis – CCB National President

Welcome to the fall season! If weather is like what the summer was we should expect lots of sunshine.

The Canadian Council of the Blind (CCB) chapters across the country will have all started up preparing for activities and events over the next number of months. As 2019 is the anniversary of the CCB I anticipate many are considering ways to celebrate in their communities and demonstrate to everyone our “abilities” rather than our disability.

 

It is now the season for all sports activities to get started. Have fun, get exercise, socialize, and learn or assist in the GTT program so that we can lead a more productive lifestyle.

 

September has been very busy at the National level as well. Meetings were held with the Biosimilar Working Group (biosimilaroptions.ca). The Biosimilars Working Group is a key collaboration of diverse organizations, registered health charities, and health care advocacy coalitions who are dedicated to ensure that good outcomes for patients are at the center of health policy in Canada, specifically in the biologic medication treatment. These medications are used by many of our members for the disease processes that we need to deal with on a daily basis. This, the reason for our participation, as per our mandate –“improving the quality of life for those who are blind and in the prevention of blindness”.

 

Both our Advocacy and Membership committees met in September which will continue throughout the fall. Should you have advocacy items you would like the committee to look into contact Pat Gates at advocacy@ccbnational.net. Some of the current topics of discussion were the possibility of a National Pharmacare Program urging members to take part in consultations in communities over the next while. Also the concern of Greyhound service in Western Canada was a hot topic.  Regarding ideas of how to attract new members may be sent to Co-Chairs Heather Hannett (hjhannett@telus.net) or Jim Tokos (jtokos@ccbnational.net).

The Bylaws committee continues to work toward making required changes to comply with the CNCA. This process does require a great deal of work and thank you to Mike Vrooman for leading the committee.

 

We continue to work with other groups of and for the Blind to help improve the quality of our lives, the prevention of blindness and awareness of the organization. This involves meeting with government officials at all levels, community organizations, letter writing to ensure we continue to receive reading material of our choice plus much more. We continue to work with the International Federation on Ageing (IFA) on the Eye See You campaign, as we all know blindness has no limits of age, gender, etc.

 

There are lots of interesting articles in the newsletter. We encourage good new items, photos, or interesting articles that your chapter (such as dinners, awareness tables, sporting events,) are doing for the newsletter.

 

Louise Gillis, National President

 

 

Announcements

 

Two Important Days++

October 11, 2018 – World Sight Day

The World Sight Day is the most important advocacy and communications event on the eye health calendar.  Observed annually on the second Thrusday of October, it is a global event meant to draw attention on blindness and vision impairment.

Around 253 million people live with vision impairment worldwide, of which 36 million are blind.  The vast majority live in low-income settings.  More than 80% are aged 50 years or above.  More than 80% of all visual impairment can be prevented or cured.

 

During this World Sight Day celebrations the World Blind Union provides the following advice and call for action:

  • It is important for all to have their eyes screened once a year in order to avoid preventable causes of blindness.
  • Governments should allocate appropriate budgets across the world for vision health.
  • WBU also encourages radio and television campaigns to sensitize the public about eye conditions and interventions.

 

October 15, 2018 – White Cane Day

The mission of White Cane Day is to educate the world about blindness and how the blind and visually sighted persons can live and work independently while giving back to their communities.

 

On this year’s White Cane Day, October 15, the World Blind Union emphasizes that trainings and awareness campaigns towards the promotion of mobility and orientation using the white can guarantee autonomy to blind and partially sighted persons to choose places they would like to go to and to participate effectively in their communities.

 

You can read the WBU’s entire press releases here. http://ccbnational.net/fresco/wbu-statement-on-the-world-sight-day-2018/

http://ccbnational.net/fresco/wbu-statement-on-white-cane-day-october-15-2018/

If you would like even more information please visit www.worldblindunion.org

 

GTT at the Annual CNIB Technology Fair++

On Thursday September 27 members of the blind/low vision community, family and friends, educators, vendors and community partners gathered for the annual CNIB Technology Fair.  This event took place at Ottawa’s City Hall.  The room was filled with booths, offering everything from technology solutions that assist people living with vision loss and beyond. Ottawa’s blind/low vision community was also well-represented with a host of services, as well as the Ottawa CCB Chapter and Get Together With Technology Program.

 

2Kim Kilpatrick at the 2018 CNIB Techology Fair

Kim Kilpatrick, GTT Program Coordinator and some GTT program participants were on hand to answer questions and provide information about this innovative, peer-driven group where people could learn to use all kinds of technology for increased independence.  For example, those who stopped by the booth saw how any iPhone with Voiceover enabled would assist a blind person to read mail, find a bus stop, read short printed text aloud, take a picture, access the internet, use Social Media, attend school, and send a text. Whether blindness/low vision was life-long or recently-diagnosed, there was something for everyone! Other kinds of technology (both high and low tech) were also demonstrated.  Many visitors felt encouraged and said that they would follow up on what they had learned about GTT’s blog posts, one-to-one drop-in sessions, monthly evening meetings and/or monthly conference calls.  For more information, please contact 613-567-0311 or (toll-free) 1-877-304-0968

By Shelley Morris and Kim Kilpatrick (Picture from Fran Cutler)

Picture shows a very large GTT sign with GTT program Coordinator Kim Kilpatrick using a keyboard paired with an iPhone.

 

CCB President Advocates for Patients at International Conference ++

 

In August, longtime Canadian Council of the Blind (CCB) partner, the International Federation on Ageing (IFA) hosted delegates from 75 countries at the 14th Global Conference on Ageing, in Toronto. The conference focused on critical issues facing older people today and for future generations. A diverse range of topics on ageing, which included a focus on vision were addressed and debated, guided by insights from thought leaders, new research, and real-world examples.

 

CCB President Louise Gillis was invited to participate in a panel discussion with experts from the World Health Organization, the IFA, and Canada’s leading ophthalmologists. Rooted in ageism is the false and problematic myth that vision deterioration is just a part of ‘normal’ ageing. Vision loss is not an ‘ageing issue’ yet among adult at-risk populations there is a relatively low-level awareness of the need for regular eye screening, symptomatology of eye diseases and access to safe and effective treatments.

 

The panel discussion explored the relationship of vision-loss and declines in the health and the wellbeing of older populations, while focusing on important access, screening and policy issues that are threatening an individual’s ability to optimize vision health.

 

“Ensuring the voice of the patient is heard loud and clear is always an objective for me,” says Louise Gillis, CCB President. “With such a high profile conference, this was an important opportunity to not only highlight concerns and issues from the vision community, but to help establish an actionable framework that in collaboration with various stakeholders, we can achieve.”

3Louise Gillis at the IFA 2018 Conference

The vision symposium at the conference was a marquee event that put ‘vision health’ on the priority list for Canadians. Through their ongoing work on the Eye See You campaign, the CCB and the IFA are a driving force, advocating for the rights of all patients. New advocacy initiatives are underway and the groups encourage you to visit http://www.eyeseeyou.care to ensure your voice is heard.

 

CCB Health & Fitness October Update!++

Thanks to everyone who participated in our September Mindful Eating Challenge.  We received some great feedback from across the country.

 

What have you learned from examining your own eating habits? Have you made any tweaks?  Have any questions?

 

As always, it isn’t a one size fits all answer, it is about being self aware and making little changes over time.  Small changes in our lifestyle habits can have huge payoffs!!  What’s the old saying?  Slow and steady wins the race!!  Keep being mindful and looking for opportunities to make healthy choices.

 

FITNESS TRACKERS

As we turn the page on a new month, I got thinking about the number of CCB members out there that either:

-use their smartphone’s GPS or accelerometer and an app, to measure their activity -use a dedicated activity tracker or fitness wearable, such as a gps watch, heart rate monitor, fitness tracker (fitbit, garmin, polar)

We all love technology and CCB Health & Fitness will be looking at this a bit more in depth as we move forward.

 

We would LOVE and appreciate your feedback.

 

Please send Ryan an email letting him know what technology you use to keep track of fitness; you phone, a dedicated fitness wearable, or none at all?

 

ccb.healthandfitness@gmail.com

 

As always, we welcome feedback and suggestions on topics and challenges moving forward!

 

 

 

 

CCB Chapter Update++

 

Hands of Fire proudly welcomes you to our third annual fundraising event: It’s in the Fingertips – A Night of Art and Music! Hands of Fire is a not-for-profit organization and a chapter of the Canadian Council of the Blind which offers sculpture classes to blind and visually impaired individuals. We are a Toronto-based group comprised of a number of talented blind and visually impaired artists who are thrilled to showcase their amazing and diverse works of art to the greater Toronto community in this fundraising event.

4Kangaroo by Susanna

This year’s fundraiser will be hosted at Jumblies Theatre, located 132 Fort York Boulevard, Toronto, ON M5V OE3. This downtown gallery space is steps from public transit and easy to access. Sculpture made by the artists will be on display and for sale, with the artists present to socialize and speak about their art. We are excited to announce that this year’s fundraiser will include live musical performances by members of the blind and visually impaired community as well! With great art, music, a sociable and friendly environment, as well as food and drinks, this night promises to be one to remember.

 

On behalf of Hands of Fire, we cordially invite you to come visit us this November 10 at Jumblies Theatre for a night of art and music, and all for a great cause!

 

 

 

 

CCB Chapter News:++

 

CCB Chatham/Kent Chapter: The past 14 months have brought about the establishment of a new Chapter, customized Chapter logo, creation of our Mission Statement “providing support, information and social activities for all our members”, the recruitment of the current 40 members, both blind or visually impaired and sighted, grant writing including budget development and submission, 3 fundraising events, 2 of them very successful and the other one I’ll classify as a learning experience while maneuvering through the Municipality rules, regulations and bi-laws.

 

Every Chapter member had the opportunity to participate in the following events – golf, lawn bowling, self-defense classes, mini golf, horseback riding, game day, trivia night, pot lucks, BBQs, monthly bowling, Christmas get-together, Pizza party, Elmira Maple Syrup Festival bus trip, volunteering at the information booth for RetroFest, and manning the information table at various senior awareness events.

 

Our Chapter meetings have had guest speakers from the Canadian Mental Health, Police Department, Hydro Rebate Program representative, Heart and Stroke and Self Defense instructors.

It’s been quite a ride!

Kathie & Dave

 

 

 

US House of Representatives Passes Marrakesh Treaty Implementation Act Treaty Now Awaits Presidential Action ++

 

Washington, DC (September 25, 2018): The United States House of Representatives has passed the Marrakesh Treaty Implementation Act (S. 2559), which makes modest changes to copyright law that will bring the United States into compliance with the terms of the Marrakesh Treaty. The Senate gave its advice and consent to ratification of the treaty and passed the implementing legislation on June 28.

 

“For almost a decade now, the National Federation of the Blind, our partners, and other advocates have worked to bring the Marrakesh Treaty into being and into force,” said Mark A. Riccobono, President of the National Federation of the Blind. “Today we applaud the United States House of Representatives for its passage of the Marrakesh Treaty Implementation Act. We now urge President Trump to sign this implementing legislation, and to order the State Department to deposit the instrument of ratification with the World Intellectual Property Organization as soon as practicable. We are closer than ever to the day when blind Americans will have greater access to the world’s knowledge, in many of its original languages, than we have ever had in human history.”

 

 

Assistive Technology

 

Introducing the Doro 824++

It’s the smartphone designed to make mobile more accessible. And it’s available exclusively at Bell.

 

Simplified user interface

With specially designed apps and an easy-to-read 5” HD screen, it’s easy to use email, access your camera, browse the Web or message your contacts. Plus, the Google TalkBack feature helps low-vision users navigate. The Doro 824 is intuitive and understandable with larger fonts and a simplified menu.

 

Safety and support features

Stay safe with a dedicated emergency assistance button that dials a predefined contact. Step-by-step guides and videos will coach you through the basic features, helping you understand your new phone. The My Doro Manager app lets your relatives or caregivers remotely manage settings, share photos, set up accounts, add calendar appointments and more – all done remotely.

 

Modern design

The stylish, accessible design combines the simplicity of basic phones with the more advanced features of smartphones. Ergonomic and grip-friendly, the Doro 824 comes designed with physical buttons, including an emergency button.

 

HD camera and sound

Take beautiful pictures with the 8-megapixel camera. It’s easy to capture the moment by pressing the physical camera button. Plus, with the 2-megapixel front-facing camera and the Google Hangouts app, you can stay connected through video chat.

 

Need some extra help? The Doro is hearing aid compatible and provides loud, crystal clear sound.

 

Doro 824 customers who self-identify as having an accessibility need qualify for an $8.54 monthly bill credit. Please let your Bell customer service representative know when activating your phone, or contact the Bell Accessibility services centre.

 

Accessibility add-on: complimentary 2 GB of data per month for qualified customers with hearing, speech or visual accessibility needs.

 

For more information, please visit: https://www.bell.ca/Mobility/Products/Doro-824?INT=MOB_mobdevpg_BTN_poplink_Mass_051016_mb_details

 

Bank Note Reader Update++

Today, the Bank of Canada announced that it will begin to phase out the bank note reader program. The bank note reader is the handheld device that identifies denominations through machine readable codes.

 

As technology continues to evolve, the Bank has determined that there are more modern devices that can be used. For those with a smartphone or tablet, the Bank has evaluated apps currently on the market, and both Seeing AI and NantMobile Money Reader quickly and reliably denominate Canadian bank notes.

 

There are several benefits to using apps: they are free and easy to download and try out; they are easy to update as new bank notes enter circulation; and instead of a single function device like the bank note reader, smartphones and tablets have built-in accessibility features that can be used for various needs.

The bank note reader will continue to be available for a time, but no further upgrades are planned and the reader will not be compatible with the next generation of vertical bank notes.

A number of bank note accessibility features will continue to help the blind and partially sighted recognize all five denominations with confidence. They include: the tactile feature, large high-contrast numerals and use of distinct colours for each denomination.

 

The Bank is also issuing a recall of the latest model of the bank note reader to upgrade and improve its performance with the polymer notes currently in circulation.

 

Those who’ve received this model of the bank note reader will be contacted by telephone and offered an upgraded device. A “swap” approach will ensure that individuals are never without a reader.

 

 

Donna’s Low Tech Tips: A scam alert++

 

Today, I’d like to introduce you to my scam alert.

Those emails asking you to login and verify your username and password that appears to be coming from your bank or insurance company.

 

If the email in question that you have received seems to be from a bank or insurance company that you do not do business with then you are okay.  Just delete it and move on.

 

On the other hand if the email in question is from a bank or insurance company that you do business with; then by all means you can read it but my advice would be to also delete it.

 

No bank or insurance company would ever send you this type of email.

 

Not sure?  Then just visit your bank.

Ask them to verify that they never sent you such an email. You could also call to verify as well.

 

Some of these types of emails may also go as far as to ask you to provide such details as your date of birth and account number.

 

Just delete this email and move on.

What would happen if you were to respond?

 

The simple answer would be trouble, lots of trouble, and now you have given a scammer out there carte blanche to hack into either your bank account and/or your very own computer system.

 

In the News

 

 

HoloLens can now guide the blind through complicated buildings

The headset’s ability to map a space and talk people through it may prove more important than the mixing-imagery-with-reality stuff. ++

 

HoloLens, Microsoft’s pricey face computer, is made for mixing digital images with the real world. But a group of scientists found it’s really good at a totally unanticipated application: helping blind people find their way through buildings and offering a better sense of where objects are around them.

 

The researchers, at the California Institute of Technology, created a new guiding app for HoloLens by taking advantage of the device’s real-time room and object mapping capability, as well as speakers that can make audio seem to be coming from different points in three-dimensional space. They used these features to map a complicated path through a campus building and created a virtual guide that helps a blind person navigate it, calling out directions like “Follow me” from what seems like a meter or so ahead of the person, according to work recently published on the bioRxiv website.

 

An accompanying video shows how this plays out in reality. A female voice directs a HoloLens-wearing study subject, who is blind, by saying things like “Railings on both sides,”

5 This render show the actual paths taken by the users in the navigation tests (image from techcrunch.com)

“Upstairs,” and “Right turn ahead.” The man follows the commands, walking easily from a first-floor lobby up a set of staircases, around several corners, and past a few doorways until he arrives at a room on the second floor.

 

He’s one of seven subjects who tried the application. All got to their destination on the first try, though one briefly got off track. Markus Meister, a professor at Caltech and coauthor of the study, thinks the research could eventually lead to a device that could be offered to visually impaired visitors at places like hotels or malls, helping them get around unfamiliar areas more easily. There are already some tools that can be used this way outdoors, such as turn-by-turn mapping apps—but indoors, as Meister notes, there aren’t as many options.

 

The World Health Organization estimates that 253 million people are blind or visually impaired, so the potential market for such an application could be huge. But there’s still a lot of work to be done. For now, any routes from one point to another must be scanned in advance, and there isn’t a way to track other people who might walk through the space as the HoloLens wearer is navigating it.

 

But the study subject in the video, at least, was impressed with the work thus far. “That was pretty cool,” he says, chuckling, at the end of the clip.

By Rachel Metz

  Hope for new macular degeneration treatments buoys patients++

 

Sometimes it starts with wavy vision. Objects appear distorted. Familiar faces go blurry.

 

Sean Teare, a 48-year-old health care consultant from Duxbury, struggled to read menus in dimly lit restaurants. After a battery of tests, his optometrist told him he had age-related macular degeneration, or AMD, an eye disease that afflicts more than 9 million Americans and can cause serious vision loss. “It came as a complete shock,” said Teare.

 

The prevalence of the condition is rising as the population ages. The number of early-stage cases for those 50 and older is projected to nearly double to 17.8 million in the United States by 2050, according to the Centers for Disease Control and Prevention. For baby boomers, who are living longer than past generations and fiercely prize their independence, it’s a dreaded diagnosis that threatens to rob them of everyday functions such as reading, driving, cooking, or watching television.

 

With the increase in cases has come a burst of research activity. There’s currently no cure for the disorder, and no treatment for its most common form, which accounts for 85 percent of cases.

But scientists in Massachusetts and around the world are experimenting with dozens of drug candidates, including about 20 in clinical trials that work to preserve vision and, ideally, restore sight. They include not only well-established drugs, such as repurposed statins, but also new approaches such as gene therapies, stem cell treatments, and medicines tailored to the genetic makeup of patients.

 

“We’re close to seeing some important findings,” said Dr. Joan Miller, chief of the ophthalmology department at Massachusetts Eye and Ear Infirmary in Boston.

 

The disease, considered the leading cause of blindness in older Americans, is triggered by fatty deposits that damage a spot in the retina called the macular, which lets the eye see fine detail. Its rate of progression varies. Some patients don’t experience vision loss for many years; others lose sight in their central field of vision, inhibiting their ability to see straight ahead, but retain peripheral vision.

 

Patients with a more severe form of the disease can receive periodic injections of an antibody into the eye that can slow progression of the disease by blocking leaky blood vessels.

 

Miller, who helped pioneer the science behind Lucentis, approved by the Food and Drug Administration in 2006 as the first treatment for age-related macular degeneration, hopes to see a new generation of treatments emerging in the next five to 10 years.

Some of those new treatments could be less uncomfortable and time-consuming than today’s injections. The emerging field of gene therapies, for instance, promises “one and done” procedures that could stop the disease in its tracks by inserting healthy genes into cells in place of defective or missing ones. Another approach involves stimulating cells in the retina to act as mini-production factories that generate proteins to protect the macular.

 

Such advances can’t come soon enough for such patients as Laura Brennan, 64, of South Boston, who gets shots into her eyes every two months to stabilize her vision.

Brennan, who first experienced wavy vision when she was in her 50s, is determined to keep living her normal life. The injections and other adjustments have enabled her to continue walking, swimming, and working as a chef for Foodie’s Markets in South Boston and the South End.

 

“When I first noticed that I couldn’t make out someone’s face across the room, that was very difficult,” said Brennan, who recalls her father also developing macular degeneration late in life. “But I’ve been able to adapt. I know who people are by their steps or their voice. At this point, my goal is to preserve the vision that I have, not to have it decrease anymore.”

 

Hemera Biosciences, a Waltham startup, is seeking to develop a kind of vaccine that would make treatments easier and less invasive for patients like Brennan.

“Patients in their 60s and 70s will go to their ophthalmologists,” said Hemera chief executive Adam Rogers. “If they’re diagnosed with AMD, they can receive a shot and keep it at bay during their lifetimes. I think that’s something we could see in the next five to seven years.”

 

Biopharma giants such as Genentech, Novartis, and Regeneron are also working on experimental medicines. So are a raft of biotech startups ranging from Cambridge’s Gemini Therapeutics to Regenxbio in Rockville, Md.

 

For drug makers, the tens of millions of people with age-related macular degeneration are a potentially lucrative market. Sales of current medicines, mostly first-generation treatments including Lucentis, totaled nearly $5 billion in 2016, and the expected new drugs will expand the market to $11.5 billion by 2026, the British analytics firm GlobalData projects.

The approval of the first-ever gene therapy for any disease last December galvanized eye researchers. The new drug, Luxturna, treats a rare genetic retinal disease in children by replacing a mutation with a corrective gene. In March, Mass Eye and Ear performed the first-ever procedure to administer the drug to a patient.

“It opened up the avenue for other gene-based treatments, and some of that might be applicable to AMD,” said Miller.

While macular degeneration is thought to be influenced not only by genetics but by environmental factors, such as smoking, “gene therapies have incredible potential” to treat the disease, said Luk Vandenberghe, cofounder of Odylia Therapeutics, a Boston nonprofit working to commercialize retinal disease research. Decades of research to understand diseases is now helping to power the new approaches to treatments, he said.

 

There’s also hope that the success of gene therapies for maladies of the eye could help launch similar kinds of treatments for other diseases.

Ben Shaberman, an official at the Foundation Fighting Blindness, a patient advocacy group, said the retina – a thin tissue lining the back of the eye – is emerging as an ideal proving ground for the young gene therapy field.

 

“The retina is accessible and a really good target,” he said. “If you get things to work in the retina, there’s a good chance you could apply them to neurodegenerative disorders of the brain or the central nervous system.”

 

Gemini, based in Kendall Square, is trying to bring the precision medicine model being deployed in targeted cancer treatments to AMD. Unlike drug developers that try to make one-size-fits-all treatments for macular degeneration, it’s focusing on treatments tailored to subsets of patients with distinct genetic variations that put them at risk.

“We believe that genetics plays a key role, and we’re spending a lot of time trying to understand these subpopulations,” said Gemini chief executive James McLaughlin.

 

Sometimes patients themselves aren’t sure what role genetics has played in their disease. Teare, who was diagnosed with the disease in 2016, doesn’t know anyone in his family with it. He wonders if his exposure to sunlight while boating or skiing was a factor.

Teare feels lucky to have the less severe form of the disease. And he’s been quick to embrace lifestyle changes – eating a diet rich in fish and vegetables and wearing sunglasses with ultraviolet eye protection – in an effort to keep it from progressing. Last year, he ran the Marine Corps Marathon in Washington, D.C., to raise money for the Foundation Fighting Blindness.

He’s counting on his healthy diet and lifestyle – and his upbeat attitude – as he awaits the progress of research programs.

 

“This isn’t a terminal illness,” he said. “I feel I can make lifestyle changes that will keep it from progressing until there’s some kind of treatment.”

By Robert Weisman, Globe Staff   September 09, 2018

 

REMINDERS

 

 

Membership Madness++

Hi Everyone!  Becky from the office here.  All chapters should have received their membership packages.  Independent membership will be sent shortly.

 

Early Bird Draw – November 2, 2018

Chapter Rebate Deadline – December 7, 2018

All 2019 Memberships Due – December 28, 2018

White Cane Week Orders Due – January 4, 2019

WCW Insurance Requests Due – January 4, 2019

 

DON’T FORGET DONATIONS!++

Donations Received in the office in 2018 are the only ones that can be receipted for 2018.  Remember to send those donations if you want receipts.

 

 

 

www.ccbnational.net                 1-877-304-0968

ccb@ccbnational.net