Volume 22 Issue 3 Fall 2023
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Support and Advocacy
since 2001
for Pennsylvanians
with Hearing Loss
in This Issue

Nancy's Message
State Happenings
Hearing Loss & Mental Health
Awards
Walk4Hearing
Sponsors
Donors
About HLAA-PA


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The Nation's Voice for People
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DISCLAIMER
 
Opinions expressed in HearSay are those of the authors.  Mention of goods and services in articles and by sponsors does not mean HLAA-PA endorsement, nor does absence suggest disapproval.

To reach readers of HearSay, contact
Dale Long

Sponsor Coordinator
(long@hlaa-pa.org)
for information.
VOLUNTEERS NEEDED!!

Assist the HLAA-PA State Director by serving on the Advisory Council or one of its committees. The Council meets periodically at locations convenient to its membership.  But committees conduct most of their business by e-mail and occasionally meet in various parts of the state. If you think you would like to serve on the council or any of its committees, please contact one of the state leaders listed here:

State Director:    
Nancy Kingsley
(kingsley@hlaa-pa.org)
Editor: HearSay and HLAA-PA Website:
Don Groff
(groff@hlaa-pa.org)
Advocacy:   
Nancy Kingsley, Chair
(kingsley@hlaa-pa.org)
 Sponsor Coordinator:
Dale Long 
(long@hlaa-pa.org)
Outreach Coordinator:
Carolyn Meyer, Chair
(meyer@hlaa-pa.org)
ALD Demo Kit:
Bill Best, Chair 
(best@hlaa-pa.org)
Chapter Coordinators::
Mike Miles,Eastern PA 
(miles@hlaa-pa.org)
Dale Long, Central PA
(long@hlaa-pa.org)
Teresa Nellans, Western PA
(nellans@hlaa-pa.org)

 
HearSay Articles
    HLAA-PA  welcomes articles of interest to the hearing loss community for publication in HearSay, as well as suggestions for topics.  Send e-mail to editor@hlaa-pa.org 

Message from Nancy
by Nancy Kingsley, State Director

     Researchers at the University of Virginia have discovered how hearing cells repair themselves after being damaged. Their findings, published June 9 in the journal eLife, could help researchers discover ways to restore hearing.
     People are born with around 16,000 inner-ear hair cells, which are covered in sound-detecting stereocilia that can break if overstimulated by loud noise. Stereocilia normally repair themselves, which is why people often notice that they can’t hear well right after a loud concert but can do so again after more time has passed. 
     But as people age, the repair process can become exhausted and the damaged hair cells may die. Hearing loss research has long sought to find a way to regenerate hair cells that have died, but this goal is still many years away. If the damage isn’t too severe, hair cells can be repaired, but there has been very little research on how to repair them.
     When hair cell stereocilia are damaged, such as by a loud noise, microscopic lesions appear in the fibers. The University of Virginia group identified a protein called XIRP2 that detects the lesion, migrates to the broken site, and facilitates repair. The group is now looking for a “master switch,” a gene that controls the repair protein. Once researchers find the switch, they can identify molecules that target the repair mechanisms and fix the damaged hair cells. 
    
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State Happenings Carolyn
by Carolyn Meyer
Outreach Coordinator
 




STATE HAPPENINGS     
   We hope by now you are all cooling off from this late summer hot spell. Whew! The time has come for chapters to plan for the winter activities and for the next big state event. The Walk4Hearing at the Philadelphia Navy Yard 4747 South Broad Street on Sunday October 15! It is almost time.  For all details please visit www.walk4hearing.org for the Pennsylvania Walk.   Registration begins at  9 AM and and the Walk begins at11:00 AM  We need YOU to be there and register now. What better way to spend a Sunday morning in the fall in the fresh air with friends and family and even pets! Come meet Barbara Kelley, Executive Director of HLAA. There will be activities for children, a DJ, food, raffles, snacks, a tailgate area, and more.
CHAPTERS IN THE NEWS
     MontCo members have had a great summer. July 30 was their annual picnic. The weather was picnic-perfect, and about 30 members, family and friends of HLAA took advantage of it. We were happy to welcome friends from other area chapters. This was the seventh time that MontCo has arranged for this event, starting in 2015, except 2021 and 2022.
     Kathy Harral was the “hostess with the mostest” according to members and guests. She coordinated and organized all the necessary details.
     The pot luck buffet was delicious. It was a great way to relax and visit with friends.  Alice Dungan remarked she had a “fun” time. Familiar faces were Diana Bender, Don Groff, Lee Mcilhinney, Cathie Harvey and many more.  



MontCo already had its first meeting on September 5 with 12 people attending.  A great beginning for the new year.

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ChesCo
     Many thanks to Judy Shugarts for keeping us all up to date on a schedule of monthly captioned movies.  With descriptions of the movies as well! Yes, movie theatres are once again offering captioned movies with scheduled times. Others are still opting for the assistive devices we have had in the past.
     The chapter will meet on September 14 at 5:30 PM for a program entitled HOPE. Hearing Other People’s Experiences.  The focus of this program is for members to share, talk ,and support others, about their individual experiences with hearing loss.  Members are encouraged to voice questions or challenges they have had with their own hearing loss experience.  The chapter meets at Christ Community Church, 1190 Phoenixville Pike, West Chester, PA 19380.
PHILADELPHIA CHAPTER IS NOW
 PHILLY BUXMONT HEARING LOSS SUPPORT GROUP

    The Philadelphia Chapter has dissolved and is now the Philly Buxmont Hearing Loss Support Group. The group no longer is required to have a formal structure of officers and a charter.  Their mission is the same: to support and help those with hearing loss.  They will continue to meet at the Huntingdon Valley Library, Huntingdon Valley, PA on the second Saturday of the month 12:30-2:00 PM.  Meetings will be listed on the library calendar.  All are welcome.  Those involved are very excited about this new venture and have already seen a positive response.  Contact information; Lee McIlhinney leemcil@aol.com.
 
AWARDS 
    Don Groff Receives Award from HLAA-PA
     HLAA-PA gave Don Groff a plaque and a $100 contribution to the charity of his choice in recognition of his valuable contributions in producing HearSay and managing the HLAA-PA website. Don also served a number of years on HLAA-PA's Advisory Council and laid out the loop wiring for its meetings.
     When HLAA-PA switched from the print version of HearSay to an electronic version in 2018, Don took on the responsibility of managing the subscription list, putting each quarterly issue together, and emailing it to the subscribers. The website has details about HLAA-PA activities, including meeting and contact information for the local chapters. HLAA-PA thanks him for all he has done and continues to do for us. On an individual basis, Don is always “there” for us to help with our technical questions to provide guidance and suggestions for assistive devices to cope with our hearing loss. His astute focus on modern technology provides ongoing advice to improve our daily lives. We appreciate all his efforts.
                                                      
VOLUNTEERS NEEDED FOR WALK DAY OCTOBER 15
     Will you help us?  The following are needed to make the day a success:
  • Course Marshals- 18+ years old - Cheer people along the Walk path and make sure they are going the right way safely
  • Parking and Traffic directors 18+
  • Children’s Activities
  • Registration Greeters
Please contact: Bethann.rejonis@gmail.com
All volunteers get free food and water! See you there!

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 Mental Health Implications of Untreated Hearing Loss
 
    Hearing loss affects people all across the globe, with 48 million Americans reporting some degree of hearing loss.  It is believed that one in three individuals between ages 65-74 and one in two  over age 75 have hearing loss.  Over one billion young adults are also now at risk of hearing loss due to unsafe listening practices.  Much of the focus of hearing health care has been on the physical impact of hearing loss and treating it.  This article will focus on how hearing loss, specifically untreated hearing loss, can affect a person’s mental health.
       Hearing loss can affect every aspect of someone’s day.  It can impact an individual’s ability to communicate with their family,  to work, and to participate in social situations and community activities.  Hearing loss can also affect the ability to attend places of worship, understand a doctor’s recommendations, and more.  These challenges can influence mental health in a variety of ways.  A study in 2022 found that age-related hearing loss was associated with increased risk of cognitive impairment, dementia, Alzheimer’s disease, poor quality of life, physical inactivity, and social isolation, as well as depression, anxiety and stress.(1.) 
       About one in five individuals with hearing loss has symptoms of clinical depression.(2.)  It has been found that the more difficulty someone has hearing in background noise, the higher the likelihood for developing depression.  Many social situations today are in noisy and/or loud environments, including restaurants, parties, and other large gatherings.  If people do not feel that they can participate effectively in the conversation, they are more likely to retreat or be insecure about their hearing ability.  This can make them feel socially isolated and less inclined to attend these gatherings out of anxiety or fear. 
       Recent research has also investigated the relationship between untreated hearing loss and dementia.  A study done at Johns Hopkins found that mild hearing loss doubled dementia risk, moderate loss tripled the risk, and people with severe hearing loss were five times more likely to develop dementia.(3.)  There are several theories behind the relationship between hearing loss and dementia, including that hearing loss forces the brain to work harder to hear, which can put strain on the brain.  Another theory is that the frustration around hearing difficulties can lead to decreased participation, which in turn leads to social isolation and less mental stimulation.
       There is a significantly increased risk of mental health concerns for people with hearing loss in both the Deaf and LGBTQ+ communities.  Children and adults in the Deaf community report higher rates of depression and anxiety than their hearing peers.(4.)  There are several reasons, including barriers in education and employment, lack of understanding of Deaf culture by others, and difficulty navigating the hearing world due to a lack of accommodation.  Access to mental health services is insufficient for Deaf individuals, as there are very few providers who speak American Sign Language (ASL).  Similarly, individuals who are both LGBTQ+ and have hearing loss must deal with a host of challenges related to the intersection of their identities, including navigating outness among a small Deaf community and dealing with hearing loss in LGBTQ+ spaces.(5.)  
       It is important to understand that there are ways to decrease the risk of poor mental health related to hearing loss and to improve confidence in communicating in social situations.  One way to do this is by treating the hearing loss with amplification.  Hearing aids and other devices, such as bone conduction hearing aids and cochlear implants, can help provide access to sound and make speech clearer so the wearer does not have to work so hard to understand what is said.  Communication strategies, such as using visual cues and removing background noise, can also improve ease of listening.
       Much of the discussion regarding treating hearing loss relates to physically treating it, whether through a hearing aid or medical intervention.  Despite all the research findings about the impact of hearing loss on mental health, there is very little discussion about considering mental health services.  People with bothersome tinnitus--a perceived sound in the ear with no external sound causing it--are referred for cognitive behavioral therapy (CBT) with known benefit.  We hope that the conversation around mental health care for people with hearing loss will help bring this option to light and encourage those who are impacted to come out of their isolation and feel more confident communicating with those around them.

Danielle Leibowitz, Au.D.
Clinical Audiologist
Penn Medicine


1. ”Is There an Association Between Untreated Hearing Loss and Psychosocial Outcomes?” Jayakody et al., 2022
 2. “Depression and Hearing Loss” | healthyhearing.com
3. “The Hidden Risks of Hearing Loss” | Johns Hopkins Medicine
4. “How is Deafness Affecting Your Mental Health?” | Deaf Unity
5. “Mental Health of Deaf* LGBTQ Youth” | The Trevor Project
 
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  HLAA-PA Congratulates Pennsylvania’s HLAA Award Recipients
 
    Four Pennsylvania residents received awards at the HLAA 2023 Convention in New Orleans. Sophie Shapiro was one of two recipients of an Outstanding Young Adult Award; Mike Miles was one of two recipients of a Spirit of HLAA Award; and Beth Ann Rejonis and Mitch Bilker received the Walk4Hearing Spirit Award. Here are the details, from https://www.hearingloss.org/programs-events/hlaa-2023-convention/awards-convention.     
Outstanding Young Adult Award 
     This award recognizes HLAA members 18-30 years of age who have contributed significant time and effort to advancing the HLAA mission.
Sophie Shapiro, Pennsylvania
Sophie Shapiro was diagnosed at three years old with moderate to severe hearing loss. Nervous about sharing her hearing loss with her schoolmates and not wanting to seem weird or different, Sophie chose not to wear hearing aids. Even when her hearing continued declining, she resisted wearing hearing aids. In 2021, Sophie was invited by her ASL tutor to attend a Pennsylvania Walk4Hearing meeting where, for the first time, she met people wearing hearing aids and cochlear implants who spoke openly about their hearing loss. Sophie began to see others like her who were able to talk freely about hearing help in this setting.
Now a high school junior, Sophie has served on the Pennsylvania Walk4Hearing committee for the past two years. It was through involvement with the Walk4Hearing community that she finally made the decision to try wearing a hearing aid, 12 years after her initial diagnosis. Sophie has spoken about her hearing loss at school assemblies and has recruited students to join her sign language club, which became the largest and most popular student club in its first year. She even started a TikTok channel to share her views on hearing aids and encourage others to wear them. Sophie has embraced spreading the message about hearing loss.

 
Spirit of HLAA Award
     This award is presented to individuals who give unceasingly and act selflessly to help others with hearing loss in the name of HLAA.
Mike Miles, Pennsylvania
An outstanding volunteer and member of HLAA since 2012, Mike Miles has implemented local programs and provided leadership in multiple ways. Active with the HLAA Chester County Chapter since 2017, he serves as both Outreach Special Events Coordinator and Education and Scholarship Coordinator. Mike is also the HLAA Pennsylvania State Coordinator, serves on the Advisory Council for the HLAA Pennsylvania State Office and is treasurer for the Pennsylvania Walk4Hearing.
Mike is dedicated and generous; no task is too big or too small for him. For example, when COVID hit, he stepped up immediately to keep people connected by moderating online support gatherings. A huge sports fan, he has helped secure amazing donations of sports memorabilia for the Pennsylvania Walk raffle. This year alone, Mike served as Registration Chair for the HLAA Pennsylvania Lunch and Learn event, chaired a special one-day regional conference hosted by several Pennsylvania chapters and always makes time for individuals seeking support. 
Walk4Hearing Spirit Award
    This award honors an individual(s) who have inspired and brought people together as part of the Walk4Hearing.
Beth Ann Rejonis and Mitch Bilker, Pennsylvania
Beth Ann Rejonis  has been involved with Walk4Hearing since its start in 2006 and currently serves as co-chair of the Pennsylvania Walk4Hearing. Since 2012, she and Walk co-chair Mitch Bilker have worked side by side to strengthen and grow the Walk and its engagement into one of the largest and most successful Walks. Last year, they had 67 teams—the most of any location—and over the years, have raised more than $1.8 million.
Beth Ann oversees a dynamic group of volunteers and has put in place an online system to make it easy for volunteers to sign up and know their roles and time commitment. When the pandemic hit in 2020, she took the Walk’s raffle online, making it available to more people than ever. A dancer by profession, she’s known for leading warmups, getting walkers energized and fired up to walk. Mitch (not present for photo) is responsible for registration, making it easy for teams and walkers to register on Walk Day, and is the go-to guy for anything technical. In addition to his work with the Walk, he volunteers for the HLAA Pennsylvania State Office. 
 
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     2023  PA Walk4Hearing 
 
October 15, 2023

     The PA Walk4Hearing will be held on Sunday, October 15, 2023 at the Philadelphia Navy Yard.  Walk4Hearing is the only nationwide event bringing attention to hearing loss and promoting the importance of hearing health.  The PA Walk is one of 21 Walks held across the country.  Funds raised support HLAA’s national awareness and education programs, HLAA chapters and state organizations, and alliances that help extend HLAA’s mission into local communities.
     The Walk is a family event with activities for the children in addition to free food and drinks.  Vendors include hearing aid and cochlear implant companies and representatives from the healthcare community, and this year there will be an onsite hearing screening van where anyone can get a free hearing screening. There will also be a raffle tent with many exciting prizes, and Barbara Kelley, HLAA’s executive director, will travel from the Washington, D.C. area to join the festivities.
     Bring families, friends and co-workers to a great hearing loss awareness event.  If you can’t make it this year, go to the Walk website at www.walk4hearing.org to find our Pennsylvania Walk and make a donation.
     Registration begins at 9 a.m., and the Walk officially starts at 11 a.m.  The Walk course is a scenic 3.1 miles on flat terrain around the Navy Yard, but you can walk as much or as little as you wish.  If you are not up to walking, you can hang out and just socialize and eat. 
     We look forward to seeing you!

 
 
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Meet Our Sponsors
 
      HLAA has a sponsorship program with platinum, gold, and silver levels. Sponsors are listed in HearSay and the HLAA-PA website for one calendar year, and we would love to include your organization. Information about becoming a sponsor is available from our sponsor coordinator, Dale Long, at long@hlaa-pa.org. 

     We are pleased to recognize the these HLAA-PA sponsors:

 
Platinum Level



Platinum Level


     Jefferson Balance & Hearing Center: Physicians and doctors of audiology offer comprehensive evaluation, treatment, and rehabilitation, including hearing aids, cochlear implants, implantable devices, and custom ear pieces. A musician services program provides evaluation and custom musician devices. Financing for hearing aids is available through Care Credit and the Pennsylvania Assistive Technology Foundation. Appointments can be scheduled by calling 215-955-6760.
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About HLAA and
its State Office, HLAA-PA

 
     The Hearing Loss Association of America (HLAA), founded in 1979, is the nation’s foremost membership and advocacy organization for people with hearing loss. HLAA opens the world of communication to people with hearing loss by providing information, education, support and advocacy.  The national support network includes the Washington, DC area office, 14 state organizations, and 200 local chapters.  HLAA is a 501(c)3 non-profit  organization.
Hearing Loss Association of America
116 Executive Blvd., Suite 320 
Rockville, MD 20852
hearingloss.org
 
     HLAA-PA is the all-volunteer state office of Hearing Loss Association of America.  We were established in 2001 to carry out the mission of HLAA for Pennsylvanians with  hearing loss, their families and friends.

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