hlaa fox valley chapter news...hlaa fox valley chapter news volume 34 issue 2 april 2019 hear...

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2019 April Meeting & Program Monday April 8th 6:15—Social Time 7:00 Program Presenter: Kelly Rehbeck, Manager at HEAR Wisconsin Program Topic: Hearing Assistive Tech- nology & Wisconsin’s Telephone Equip- ment Purchase Program (TEPP) Kelly Rehbeck, the Showroom Manager at HEAR Wisconsin, will share expertise gained from her own hearing loss, plus 25 years of experience working in the Deaf/Hard of Hearing field. She provides technology assessments and train- ing to people with hearing loss, and also to profes- sionals in Wisconsin who work in the field. She is also in charge of HEAR Wisconsin’s worksite as- sessment program that helps workers with hearing loss and their employers identify the technology and strategies necessary to succeed. Kelly will share information about Wiscon- sin’s Telephone Equipment Purchase Program that is available to hard of hearing and deaf Wisconsin- ites at no cost. There is no income qualification to receive TEPP support. Many of our chapter mem- bers benefit from the TEPP program. Please join us to learn more. HLAA Fox Valley Chapter News Volume 34 Issue 2 April 2019 HEAR Wisconsin is a nonprofit that helps infants, children, and adults with hearing loss by eliminating communica- tion and language barriers through personalized services, technology, and education. It is located in West Allis. Regular chapter meetings are held at the Unitarian Universalist Fellow- ship, Appleton. 2600 Phillip Lane. Map at www.fvuuf.org HLAA is not affiliated with UUF. We appreciate being able to use their facility. Lancet Commission to Address the Global Burden of Hearing Loss The Lancet, the world’s foremost medical journal, recently announced the formation of the new Lancet Commission to identify ways to reduce the global burden of hearing loss. The Commission follows a recent Lancet Review of the state of global hearing health care and possibilities for improving it. You can find more information about the Commission on The Lancet website https://www.thelancet.com/journals/lancet/ article/PIIS0140-6736(19)30484-2/fulltext Testers Needed for New App for People with Hearing Loss TranslateLive is a new service which allows any two people to com- municate who are in the same room or across the world (it is available in more than 120 languages). People who have a hearing loss can use it in one-to-one situations where each user can use their own device thereby eliminating the need to share. The App can also be used along other communication services (i.e., phone calls, FaceTime, Skype). Trans- lateLive is currently looking for people with hearing loss to test the app and share feedback. Since it is useful for translating and not just tran- scribing they are also asking for feedback on interactions with people who speak another language. Go to translatelive.com for more infor- mation and to sign up for your free trial. For any questions and to pro- vide feedback please email [email protected] New Trial Raising Hope for Development of First Drug to Restore Hearing 03/15/2019 LONDON, UNITED KINGDOM — Researchers at UCLH’s Royal Na- tional Throat Nose and Ear Hospital (RNTNEH) and UCL Ear Institute are leading a drug trial aimed at regenerating the sensory receptors (hair cells) in the inner ear. While long thought to be irreversible, past animal studies have indicated that these cells can be regenerated through the use of a small molecule substance known as a gamma-secretase inhibitor. Currently, there are no drugs available to treat loss or damage of the hair cells in the inner ear, referred to as sensorineural hearing loss. It is esti- mated that approximately 90% of all hearing loss is sensorineural in nature. 40 years ago when HLAA was born, very little research was being done on hearing loss. Hearing aids were primitive, cochlear implants were non existent, and no one dreamed of the assistive technology many of us use now. It’s exciting to be able to share information in our newsletter on topics relat- ed to research & development. Thanks to HLAA for pushing for positive change. Some day a cure will be found! HLAA Fox Valley Chapter has several unique pro- grams that are suitable for in service trainings, or edu- cational presentations for churches, schools, business- es, hospitals, service organizations, professional groups, etc. Contact us if a presentation on Living Well with Hearing Loss or Integrating Hard of Hearing Employees/Members/Patients, is of interest to your group. [email protected] To Chapter Participants: If you would like to be involved on our educational outreach team, please let the chapter leaders know.

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Page 1: HLAA Fox Valley Chapter News...HLAA Fox Valley Chapter News Volume 34 Issue 2 April 2019 HEAR Wisconsin is a nonprofit that helps infants, children, and adults with hearing loss by

2019 April Meeting & Program

Monday April 8th

6:15—Social Time 7:00 Program

Presenter: Kelly Rehbeck, Manager at HEAR Wisconsin

Program Topic: Hearing Assistive Tech-nology & Wisconsin’s Telephone Equip-ment Purchase Program (TEPP)

Kelly Rehbeck, the Showroom Manager at HEAR Wisconsin, will share expertise gained from her own hearing loss, plus 25 years of experience working in the Deaf/Hard of Hearing field.

She provides technology assessments and train-ing to people with hearing loss, and also to profes-sionals in Wisconsin who work in the field. She is also in charge of HEAR Wisconsin’s worksite as-sessment program that helps workers with hearing loss and their employers identify the technology and strategies necessary to succeed.

Kelly will share information about Wiscon-sin’s Telephone Equipment Purchase Program that is available to hard of hearing and deaf Wisconsin-ites at no cost. There is no income qualification to receive TEPP support. Many of our chapter mem-bers benefit from the TEPP program. Please join us to learn more.

HLAA Fox Valley Chapter News

Volume 34 Issue 2

April 2019

HEAR Wisconsin is a nonprofit that

helps infants, children, and adults with

hearing loss by eliminating communica-

tion and language barriers through

personalized services, technology, and

education. It is located in West Allis.

Regular chapter meetings are held at the Unitarian Universalist Fellow-

ship, Appleton. 2600 Phillip Lane. Map at www.fvuuf.org HLAA is not

affiliated with UUF. We appreciate being able to use their facility.

Lancet Commission to Address the Global Burden of Hearing Loss The Lancet, the world’s foremost medical journal, recently announced the formation of the new Lancet Commission to identify ways to reduce the global burden of hearing loss. The Commission follows a recent Lancet Review of the state of global hearing health care and possibilities for improving it. You can find more information about the Commission on The Lancet website https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)30484-2/fulltext

Testers Needed for New App for People with Hearing Loss TranslateLive is a new service which allows any two people to com-municate who are in the same room or across the world (it is available in more than 120 languages). People who have a hearing loss can use it in one-to-one situations where each user can use their own device thereby eliminating the need to share. The App can also be used along other communication services (i.e., phone calls, FaceTime, Skype). Trans-lateLive is currently looking for people with hearing loss to test the app and share feedback. Since it is useful for translating and not just tran-scribing they are also asking for feedback on interactions with people who speak another language. Go to translatelive.com for more infor-mation and to sign up for your free trial. For any questions and to pro-vide feedback please email [email protected]

New Trial Raising Hope for Development of First Drug to Restore Hearing 03/15/2019 LONDON, UNITED KINGDOM — Researchers at UCLH’s Royal Na-tional Throat Nose and Ear Hospital (RNTNEH) and UCL Ear Institute are leading a drug trial aimed at regenerating the sensory receptors (hair cells) in the inner ear. While long thought to be irreversible, past animal studies have indicated that these cells can be regenerated through the use of a small molecule substance known as a gamma-secretase inhibitor. Currently, there are no drugs available to treat loss or damage of the hair cells in the inner ear, referred to as sensorineural hearing loss. It is esti-mated that approximately 90% of all hearing loss is sensorineural in nature.

40 years ago when HLAA was born, very little research was

being done on hearing loss. Hearing aids were primitive,

cochlear implants were non existent, and no one dreamed of

the assistive technology many of us use now. It’s exciting to

be able to share information in our newsletter on topics relat-

ed to research & development. Thanks to HLAA for pushing

for positive change. Some day a cure will be found!

HLAA Fox Valley Chapter has several unique pro-

grams that are suitable for in service trainings, or edu-

cational presentations for churches, schools, business-

es, hospitals, service organizations, professional

groups, etc. Contact us if a presentation on Living

Well with Hearing Loss or Integrating Hard of Hearing

Employees/Members/Patients, is of interest to your

group. [email protected]

To Chapter Participants: If you would like to be

involved on our educational outreach team, please let

the chapter leaders know.

Page 2: HLAA Fox Valley Chapter News...HLAA Fox Valley Chapter News Volume 34 Issue 2 April 2019 HEAR Wisconsin is a nonprofit that helps infants, children, and adults with hearing loss by

Milwaukee Walk4Hearing

Saturday, May 11, 2019

Please consider joining the “State Step-

pers” walk team! It’s a great way to show

that hard of hearing people are in it to win

it by creating awareness of the high inci-

dence of hearing loss.

We’ve all bought the cookies, pizzas &

wrapping paper from our neighbors,

friends & family members. Now it’s our

turn to ask them to reciprocate to our non-

profit cause, namely the HLAA. Most will l

return the favor, so go ahead & ask them.

You can bring donations to the April chap-

ter meeting. Christine Klessig will record

& forward them to the state team. Both

she & Julie Olson are registered ‘State

Steppers’ team members. Or donate online

at www.walk4hearing.org (Milwaukee

Walk)

We are communicating better, but we are still not out of the woods!

Image: Cartoonresource (Shutterstock)

Editor’s Edifications…..by Julie Olson

In the past month, 4 people have asked me why I’ve re-

mained actively involved in HLAA for so long. I’ve ‘hung

in’ because I’ve learned more about hearing loss, hearing

technology, medical research, coping strategies, etc. through HLAA

than from any other source, including the internet. The ‘hook’ has been

the opportunity to help others the way I was helped 35 years ago.

HLAA is about people connecting with people who openly discuss how

hearing loss affects their lives. Yesterday, someone told me that hear-

ing loss was ‘killing their marriage’, and wondered if I had any sugges-

tions. Hearing loss, especially adult onset hearing loss, can be a real

drag on a relationship of any kind.

This person is the spouse of someone who has created a personal

‘hearing loss closet’ they refuse to come out of. They won’t go to church

or social gatherings. They have chosen isolation and reclusiveness over

trying. They are fearful of attending HLAA gatherings because they

don’t hear well. They have never experienced a meeting with real time

captioning or hearing loop accommodations. They know nothing about

communication access, and their fear prevents them from learning.

It’s important to understand that the life and wellbeing of the signifi-

cant other can be as deeply affected by this behavior as it is for the per-

son with hearing loss is. Here is my advice:

I encourage you to connect with The Hearing Loss Assn. of America,

Inc. You will find solutions the pros never discuss with you because

they come from trial and error with other people who have hearing

loss. HLAA discussions often relate to relationships. Far too many

myths surround hearing loss, along with super high doses of stigma! In

other words, we are misunderstood. By not openly discussing this we

allow that stigma thing to grow.

Most people with typical hearing think that hearing aids 'correct' hear-

ing loss. They don't, but well fitted hearing aids do help. Many think

we can hear when we want to. Not true, but it often appears that way.

People with typical hearing don’t know how hard people with hearing

loss work to hear; that it's exhausting. When we are fatigued, we can’t

concentrate the way we need to, so we are inclined to drop out of con-

versations. We miss things our hearing partners think we heard. We

feel left out in conversation, while our hearing partner assumes we

heard and acts accordingly. They don’t know when we need help, and

we don’t always know when to ask. This can lead to a lot of misunder-

standings.

It helps both partners to meet other people who live with hearing loss,

theirs or someone else’s. It gets us out of the isolated place where we

can feel sorry for ourselves all day long, and gives us the chance to talk

about it with people who 'get it'. Once we have a clearer understanding

of what hearing loss does to us, we know what to work on to keep our

relationships healthy. We can even learn to laugh at some of the expe-

riences we’ve had. We are not alone with hearing loss unless we choose

to be. Still, it will sometimes feel that way, especially in a crowd.

HLAA gatherings are open to anyone who wants to learn how to live

well with hearing loss; theirs or someone else’s. Try Fox Valley Chap-

ter’s discussion groups, and educational programs. The chapter is

here for you. Through participation you will find answers. It’s

up to you to make the next move!

March Program Summary...

Thank you to Landen Lacey,

speech pathologist and representa-

tive of Med-El Corporation, for anoth-

er excellent presentation on aural

rehabilitation for adults. Hard of

hearing people in-the-know, realize they need

to practice listening skills. It helps so much to

learn what to practice and how to figure out the

sounds we are missing. We had a nice crowd at

the March meeting, and everyone went home

with some excellent tips!

Better yet….

Join the TEAM!

Page 3: HLAA Fox Valley Chapter News...HLAA Fox Valley Chapter News Volume 34 Issue 2 April 2019 HEAR Wisconsin is a nonprofit that helps infants, children, and adults with hearing loss by

The Sponsor Program is Fox Valley Chapter’s main fundraiser. Appeal Letters were sent to previous & potential

Sponsors in February. Names will be added as donations are re-ceived. Thank you to everyone who supports Fox Valley Chapter this way. NOTE: If your name or business is not listed correctly, please

let us know immediately. If you wish to support the chap-

ter this way, send your check to: HLAA-

Fox Valley Treasurer, P.O. Box

25, Menasha WI 54952.

2019 Chapter Sponsors

Platinum Level ($200 or More)

Fox Valley Hearing Centers, Inc. Candy McGinnis AuD, Jody Jedlicka AuD, Stephanie Long AuD

Melissa Dintelman AuD, Britanny Uitenbroek AuD

Douglas Grant MD Haviland Hearing Aids Inc. Peter J. Zellmer, AuD. Kyle Martell, AuD Jim Machalk Howard Porter Janet Muthig & Sharon Ihrig, daughters of James Muthig given in his memory Rural Audiology Services Kari Kramer AuD & Becky Franz MS CCC-A

Raymond Smith Gold Level ($100 - $199) Jo Kintopf-Crabb, Michelle Frisbie, Mary & Liz Ginke, Mike & Susan Landreman, Rosemary Smith, Carol Smo-kovich, Jan & Diane Veenendaal, Walt & Phyllis Ziemke Silver Level ($50 - $99)

Jim & Rhonda Bartelt, O.C. & Pat Boldt, Suzanne Brown, James Hemmen, Ione Muehlenbein (in memory of Paul), Julie & John Olson, Charles E. Rud, Sharon Salm, LeRoy Sauer, Karen Lindberg-Schuppe, Lyle & Phyllis Sconzert, Aurelia Stampp, Jerome & Phyllis VanHandel, Paul & Har-riet Zuicker

Bronze Level ($25 - $49)

Kevin Gossens, George Van Amber, Katie Weber, Ken & Mary Ann Walter

We are grateful to these Sponsors for their generosity and

support of HLAA Fox Valley Chapter. Their support allows us to print & circulate this newsletter, to pay rent to hold

regular meetings in an accessible facility, to provide infor-mation & materials to those who attend our meetings, to

educate ourselves & others on new technology, to provide stipends for members to attend outside educational events,

& so much more.

We are grateful to everyone who has made smaller dona-tions to our treasury, & to those who contribute personal

resources of time, energy, mileage & more.

Meetings are open to the public, and are run by volunteers.

.

HLAA shares information, educates, advocates & provides sup-

port to people with hearing loss who choose

to live in the hearing mainstream.

HLAA does not endorse products, providers or services. We share information that makes it possible for people with hearing loss to make informed decisions.

Thank

You!

Save these Dates - Nov. 15 & 16

Shining New Light on Hearing Loss

2019 HLAA State Conference in Appleton

Friday - HLAA-WI Annual Meeting & Reception

Saturday - Presentations, Exhibits & Lunch

Thank you to the people at the

March chapter meeting who

signed up to help with ‘small

jobs’ for the conference. We’ll be

contacting you in the near future

to clarify those jobs. We’re off to a

good start.

Right now we can tell you that

the event will be held at Bordini Center in Apple-

ton. That venue is equipped with a hearing loop,

and has the space and technology we need for a

crowd and for exhibits. Food will be available

there, so we are planning buffet service for the

event. We will need help welcoming attendees and

taking care of registrations and reservations. Our

greatest area of need is help promoting the confer-

ence. PR and outreach will determine the success

of the event. Please promote the event.

We’re looking for veterans with hearing loss

who are willing to lend a hand in getting in-

formation out to other veterans about the

conference. National data shows that the two

most prevalent disabling conditions occurring in

veterans returning from combat zones are tinnitus

and hearing loss.

The conference will feature programs of special in-

terest to people with noise induced hearing loss.

We will recognize veterans with a special thank

you for their service at the event.

More information will be included in upcoming

newsletters. Meanwhile, please think how you

might be able to help the planning committee.

Thank you!

Julie Olson, Christine Klessig & Dale Voskuil from

Fox Valley Chapter; Jerry Lapidakis & Emil Quast

from HLAA-Wisconsin.

Sharing is Caring!

Please Tell People About HLAA!

* Bring a friend to an HLAA gathering.

* Share HLAA literature with others.

* Distribute flyers about our meetings.

* Share our newsletter.

Page 4: HLAA Fox Valley Chapter News...HLAA Fox Valley Chapter News Volume 34 Issue 2 April 2019 HEAR Wisconsin is a nonprofit that helps infants, children, and adults with hearing loss by

HLAA-Fox Valley Chapter

P.O. Box 25

Menasha WI 54952-0025

2019 Chapter Leadership Board

Steering Committee Co-Chairs

*Christine Klessig [email protected]

*Julie Olson [email protected]

Treasurer: *Michelle Frisbie michellelfris-

[email protected]

Program Chair & CI Group Chair: *Rhonda Clancey

[email protected]

Member at Large: *Dale Voskuil [email protected]

Member at Large: *Jane Young [email protected]

Newsletter Editor: Julie Olson: [email protected]

Phone Contact/Social: ‘T’ Van Asten 920-420-8462

H.O.P.E. Chair: Nancy Gilbertson

[email protected]

Chapter e-mail: [email protected]

Support Crew: Dave Gilbertson, Bob Opsteen, Jerry

Van Handel, Paul & Harriet Zuicker

Feel free to contact any of us personally, or use the

chapter’s e-mail address. We will respond as soon

as possible.

* Designates Members of the Chapter Board of Trustees

Disclaimer—HLAA does not endorse products or ser-

vices. Mention of such is intended to provide readers

& those who attend meetings with information on

products or services that might be of interest, & is not

a recommendation or endorsement.

Our newsletter is available by regular mail or e-

mail. The e-mail version is in color with live links.

Let us know your preference if you wish to change.

* Spring is officially here! Baseball season has

started, and summer plans are in the works. Hap-

piness reigns! Yet many people ponder “Where

am I on the scale of happiness?” What am I doing

with my life?” “How can I be happy when hearing loss perme-

ates my entire being?”

If you are among those asking such questions, consider your-

selves fortunate. There is a place for you to find answers and

support. Whatever pain hearing loss causes, discovering and

connecting with HLAA folks can bring increased hope. With-

out hope, little is left with which to answer the questions

above. Happiness is reached through a combination of circum-

stance, and physical and mental attributes. HLAA helps by

giving you options, by showing how you can improve your life

with a hearing loss, and, importantly, by bringing you into

contact with other people with hearing loss. People need peo-

ple. No one has to be alone with hearing loss.

Observers, over the years, have noted that what we do for

ourselves dies with us, but what we do for others remains and

continues to grow. Everyone wins when we get together to

talk, to learn, and to share our experiences.

*With credits to Howard E. “Rocky” Stone, Founder of HLAA

“An Invisible Condition; The Human Side of Hearing Loss”

HLAA Fox Valley Chapter’s HOPE subgroup provides a forum

where you can ask questions you may be hesitant to ask else-

where. H.O.P.E. meets on the 4th Thursday at UUF from 1-3 PM.

The next meeting is April 25th.

We hope to see you there!

Nancy Gilbertson is the facilitator and chair of

Fox Valley Chapter’s H.O.P.E. Group. She can be

reached at: [email protected]

2019 Chapter Program Calendar

April 8: Hearing Assistive Technology & How to Get It

May 13: Cochlear Implant Surgery Option in Green Bay

June 10: Things You Should Know About ID Theft & Scams

July 8: Summer Social at Appleton Yacht Club

August 12: Confused About How to Get Hearing Help?

September 9: Advances in Hearing Aids from an Audiologist

October 14: Mysteries of Meniere’s Disease Panel

November 11: To Be Determined

November 15 & 16 HLAA-WI State Conference in Appleton

This newsletter serves as our meeting notice. Feel free to con-

tact any of us if you have questions. Cochlear Implant Discussion Group Meeting...

The next meeting of the CI Discussion Group will be held at Neenah Festival Foods upstairs meeting room on April 15th. This group is NOT brand specific. Anyone with a cochlear implant is invited. If you or someone you care about is considering a CI, and would like to know more from people who have them, you are wel-

come to join us! We may not have ‘all the answers’, but together we have a lot of experiences to share!

See you there!

Rhonda Clancey, CI Group Chairperson

NOTE: The meeting room is above the deli. Elevator is available.

HLAA is a membership organization. As an HLAA

member, you are part of an organization with a mission to

provide information, education, support and advocacy to

people with hearing loss. Through our advocacy work at

the federal level, we represent 48 million people with

hearing loss in the United States – that includes you.

Individual $35 Family/Couple $45 Student $20

Dues can be paid online: www.hearingloss.org We do not

have chapter dues, but encourage national membership.

Our meetings are open to anyone interested in learning.