The Future of Hearing Loss and the Search for a Cure

Sue Schy writes on hearatboston@googlegroups.com:

Today’s presentation on “The Future of Hearing Loss and the Search for a Cure” was a real eye-opener for me.  As much as I’ve heard about hearing research and gene therapy, I never really knew exactly what it involved or who might benefit from it.  Well, I was enlightened and this cutting edge research sounds like it is on the horizon for countless future generations to benefit from.

Thank you to Akouos and Frequency Therapeutics!

The real purpose of this email, however, is to give you a few websites and links that were mentioned in Dr. Michael McKenna’s (https://akouos.com/) and Dr. Carl LeBel’s (https://www.frequencytx.com/) talks.

Sing Registry for hearing loss (identifying over 100 genes causing hearing loss):  https://singregistry.itakecontrolhealth.com/

https://clinicaltrials.gov/ is the site the Dr. LeBel spoke of to help find hearing clinical trials in your area.

The Boston Chapter will be taking a break over the summer but we’ll still be around if anyone has any pressing needs.  Please email me directly or you can always get us through Contact HLAA Boston.

In the meantime, stay well and stay safe.
See you in the fall,
Sue

Upcoming Events

Sue Schy writes on hearatboston@googlegroups.com:

The group from central MA collated all the meetings for the rest of the year culminating with the virtual convention. Don’t forget to mark your calendars.

Saturday June 6, 2020:
HLAA National Virtual Meeting
2-3:30 pm
Topic: Advocacy & Impact:
Effective Communication in Health Care Settings
https://www.hearingloss.org/event/hlaa-national-virtual-meeting-6-6-20/?instance_id=902
Saturday June 13, 2020:
HLAA Boston Chapter Virtual Meeting
2-4 pm
Topic: Boston Biotech Hearing Research
Akouos and Frequency Therapeutics
Featured in a February Boston Globe article:
https://www.bostonglobe.com/2020/02/02/metro/boston-area-startups-making-slow-progress-fight-against-hearing-loss/
Thursday June 18 and Friday June 19, 2020:
Experience HLAA!
Online “Convention” experience
https://web.archive.org/web/20200608045400/https://www.hearingloss.org/programs-events/convention/schedule/
Topics include
·       Opening session (Thursday noon -1)
·       Potential for Regenerative Medicine to Restore Hearing Loss (Thursday 2-3:30)
·       Workplace Gain: A Discussion on Self-Advocacy, Marketing and Navigating the Workplace with a Hearing Loss (Thursday 5-6:30)
·       Research Symposium: The Latest on Tinnitus Research (Friday noon – 1:30, Meet the Scientists and Q&A 2:30-3:30)
·       Hearing Loss and the Health Care System: A Call to Action (Friday 4-5:30)
·       Virtual Exhibit Hall (throughout the Experience HLAA! Event)This replaces the canceled convention.

HLAA Boston Chapter Mini-Letter

Betty Hauck writes on hearatboston@googlegroups.com:

Thanks to Sue Schy’s efforts, with help from Andrea Kaneb who is an N-CHATT volunteer, we had our second virtual meeting [May 16] and our first with captions, using Google Meet. It was great to see 20 participants including a few from other MA chapters, who were present to hear Kevin Franck, the head of audiology at Mass Eye and Ear, speak about hearing loss in the age of Covid-19. He spoke about services that are available at MEEI and much useful information that is accessible from the MEEI website https://www.masseyeandear.org/.

If you go to your website you can find lots of helpful information that you can transfer to your own smart phone by holding it up to the code In the upper right corner. This includes helpful communication tools if you need to go to the hospital and online resources. If you don’t have them already thIs is a good time to download a transcribing app like Otter for iPhones or Live Transcribe for Androids that can help with communicating in a hospital setting. There is also a list of things to take with you if you should need to go to the hospital – including your hearing aids! Care and maintenance of hearing aids was also discussed.

Hearing In a World With COVID-19

image of COVID-19Sue Schy writes on hearatboston@googlegroups.com:

Please join Dr. Kevin Franck and the Boston Chapter of HLAA as he talks about hearing in a world with COVID and some of its implications.  Please watch https://vimeo.com/408989211 first.

Google Meet allows captioning. You will be able to caption this presentation from your own computer. Please click on the link below and allow access to your screen and microphone.

 
Andrea Kaneb has put together a tutorial to do this.
Google Meet meeting has passed.  (10/1/2020)

HLAA Boston Chapter Newsletter: Virtual Meetings

Betty Hauck writes on hearatboston@googlegroups.com:

We are happy to welcome Kevin Franck, head of Mass Eye and Ear audiology department who will be speaking about Hearing in the Time of Covid-19 and answering questions. For this virtual meeting the platform will be  Google Meet (formerly Hangouts). The big advantage of Google Meet over Zoom is that it has very good captions. Anyone who would like help in getting set up to participate, please email Andrea Kaneb. Andrea is a volunteer and graduate of the HLAA N-CHATT training program, and she is happy to assist you.

First Boston Chapter Virtual Meeting

After a hiatus in chapter meetings because of COVID-19, Sue Schy of the Boston Chapter steering committee got us up and running again with a Zoom meeting on Saturday, April 11, 2020. Thirteen people participated and we each had an opportunity to talk about how we’re coping with the virus, including both positive aspects and challenges. In addition to regular chapter members we welcomed Sandy Spekman who is head of the Plymouth Chapter and Margaret Myatt who is new to our chapter and is looking forward to pitching in and helping us out with her areas of expertise. Regular member Bob Broker who is a tireless volunteer in encouraging senior centers to sponsor hearing loss support groups shared his Gestures in Need aka GinN card to help communicate in hospital settings.

Face Masks and Hearing Aids

One topic that came up was the difficulty of wearing face masks with hearing aids. Masks with ties seem to work better than the elastic ones. Here is a link to additional helpful suggestions:

http://www.chicagonow.com/say-what/2020/04/wearing-a-mask-with-hearing-aids/

Optimal Meetings

Another topic was lighting during Zoom calls. For those of us with hearing loss it is especially important to be able to see each other’s faces so lighting is critical. The best lighting combines a light source in front of your face with overhead lighting. Facing an outdoor light source like a window works well also. Backlighting does not work well because it puts your face in shadow.

For good sound, sit as close as possible to your computer or device’s microphone.

HLAA National: Don’t forget that the National HLAA website is a terrifIc resource for those of us with learning loss, especially now that we’re dealing with Covid-19. Recent past webinars are accessible as well as information about upcoming virtual meetings and the opportunity to sign up. Saturday, April 25th, Gail Hannan will be presenting at  2 pm.  www.hearingloss.org

Hearing Loss and Adaptive Skills

I wonder if hearing loss gives us a special advantage in coping with difficult conditions because it is what we do every day?

We hope you and yours are doing as well as can be expected during these trying times and that you will join us for the virtual chapter meeting on May 9th.

HLAA Boston Chapter Zoom Meeting Saturday, April 18, 2020

Betty Hauck writes on hearatboston@googlegroups.com:

We hope you are all well and managing these current extraordinary circumstances as well as possible.

This is to remind you that there will be a virtual online HLAA Boston chapter meeting on Saturday, April 18, 2-4 pm.

If you have no experience with Zoom and need help getting set up, please contact Sue Schy who will be hosting the meeting. This will be an experiment as we’re all more or less new to this.

Here is a link to join the meeting:
https://us04web.zoom.us/j/794059716

Meeting ID: (suppressed)
Password: (suppressed)

This is also a reminder that there are lots of great resources on the HLAA National website:  www.hearingloss.org

HLAA has been hosting webinars and Zoom meetings relevant to the pandemic with lots of useful information. If you haven’t been getting the emails you can go to the website and sign up for upcoming webinars and access past ones.

Best wishes to all.

Cochlear Implants, March 21, 2020

CancelledSaturday, March 21, 2020, 2pm-4pm

Want to learn about Cochlear Implants? Find out about what the latest developments are in the newest models? Then come to the next meeting of the HLAA Boston Chapter!

Where: Watertown Free Public Library, 123 Main Street, Watertown, MA

What: Cochlear Implants have come a long way since they were first introduced in the early 70’s

Reps for the three major CI companies will be present to tell us about their products and answer our questions. The company reps are from Advanced Bionics, MED-EL, and Cochlear.

There will also be time to meet and greet other with hearing loss and enjoy refreshments together. Family members are welcome, too!

  • CART will be provided
  • Room is looped for T-coil
  • Refreshments served
  • Parking in back
We are canceling the March 21st event out of an abundance of caution as we don’t want to inadvertently expose any of you to this virus.
The cochlear implant company representatives have been notified and we will reschedule when we feel it is safe to do so.  We will get more details to you once we have them.
In the meantime, stay safe and stay healthy.
-Sue Schy

HLAA Boston H.A.T. Party

Andrea Kaneb took detailed notes and has given us a great summary of Saturday’s HAT presentation of our favorite devices at the Watertown Public Library.  And, you can see that the spirit was high and we are all “in the groove” with our colorful hats.

Favorite Hearing Assistive Technology (HAT) devices:

Remote Microphones:

  • Phonak Roger Easy Pen
  • Oticon ConnectClip
  • Phonak ComPilot 11
  • Phonak Table Mic 11 (can network two together, turn volume all the way down on hearing aid app)
  • Resound Multi-Mic
  • Remote mics used in a group can become a “talking stick,” which makes following discussions easier

Smart Phone Apps (free):

  • Caption Call
  • FaceTime (can lipread grandchildren)
  • InnoCaption (many people like it)
  • Live Transcribe- Android phones (many people like it)
  • Otter- iPhones (many people like it)
  • Sound Amplifier app
  • Telephone speakerphone helps to hear with both ears

Alerting Devices:

  • Bluetooth phone to both hearing aids
  • LifeTone bedshaker (might be free from your Fire Department)
  • Serene Innovations Bedshaker (great if power goes out)
  • Serene Innovations CentraAlert Wearable Vibrating Personal Notification Receiver
  • Serene Innovations Home Notification System (many types of alerts)
  • Serene Innovations Instalink Smartphone Alert Watch

Wired listening devices (instead of neckloops, which require positioning):

  • Music Link ear hooks for music, audiobooks, etc.
  • T-Link ear hooks for inline mic for phone
  • Cozy Phones headband with removable wired headphones that magnetically adhere to CI implants

Things people DO NOT like about Hearing Assistive Technology:

  1. Many people are overwhelmed by it and wish it was easier, more universal, or that more education was provided.
  2. Hearing aid remote control apps are cumbersome and some people think you are rudely using your phone.
  3. Table mics don’t work well if the speaker is walking around.
  4. Some people think that the Roger Pen is confusing or not worth the cost and others do not.
  5. Phonak Marvel only accepts 2 Bluetooth devices at a time so you must choose.
  6. Many devices are not intuitive.  People at senior centers can help.
  7. Alerting devices with separate transmitters can lead to needing to push multiple doorbells.
  8. Otter can be unreliable at times with weird words.
  9. Tech can be outdated quickly and unreliable.
  10. Hearing aids that change programs automatically can be annoying and the user often wants more control.

HLAA Boston H.A.T. Party participants