Archives for May 2019

Ear Community Summer Picnics for Microtia and Atresia Families

May 30, 2019 By Leave a Comment

Ear Community is a 501c3 nonprofit organization that helps Microtia and Atresia families around the world. Ear Community is proud to host six family picnics in the United States this year! Microtia and Atresia, Hemifacial Microsomia, Goldenhar Syndrome, and Treacher Collins families…please join us!

Our summer picnics provide a wonderful opportunity for everyone to come together in the same situation, share experiences, and maybe even make a new friend. Lunch will be provided and there will be lots of fun for the kids. Representatives from hearing device companies will be available so you can learn more about the latest Baha/BAHS/sound processors and try these hearing devices on if you haven’t had the chance to do so already. We’ll have representatives from various medical device companies with helpful options for Microtia and Atresia as well helpful ear reconstructive surgeons, ENTs, audiologists, anaplastologists, and therapists mingling with all of us to help us find answers to our questions.

So, please enjoy a FUN and FREE day out with the kids! Please RSVP to the following hosts at a picnic near you. We look forward to seeing everyone this summer! – The Ear Community Organization

 

California Ear Community Picnic
Fullerton, California
Date:  Saturday, June 15th, 2019
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityCaliforniaPicnic@gmail.com

Indiana Ear Community Picnic
South Bend, Indiana
Date:  Saturday, June 29th, 2019
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityIndianaPicnic@gmail.com

Massachusetts Ear Community Picnic
Boston, Massachusetts
Date:  Saturday, June 29th, 2019 
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityMassPicnic@gmail.com

Colorado Headquarter Ear Community Picnic
Broomfield, Colorado
Date:  Saturday, July 13th, 2019
Time:  11AM to 3PM
RSVP to Melissa at:  ColoradoMicrotia@hotmail.com

Tennessee Ear Community Picnic
Nashville, Tennessee
Date:  Saturday, July 20th, 2019
Time:  1PM to 5PM
RSVP to Melissa at:  TennesseeEarCommunityPicnic@gmail.com
*This event is in collaboration with the Vanderbilt Microtia and Atresia Clinic.

New Jersey Ear Community Picnic
West Orange, New Jersey
Date:  Saturday, August 3rd, 2019
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityNewJerseyPicnic@gmail.com

Ontario Canada Ear Community Picnic
Hamilton, Ontario
Date:  Saturday, August 17th, 2019
Time:  11AM to 3PM
RSVP to Cindy at:  EarCommunity@gmail.com

A special thank you to all of our Ear Community sponsors
for helping make our events possible!
Thank you to our Platinum Sponsors
Cochlear Americas – Baha 5 Connect and Attract and SoundArc and accessories
Oticon Medical – Ponto 3 Superpower, streaming device and accessories
Thank you to our Silver Sponsors
Med-EL – ADHEAR
Stryker CMF – Medpor
Thank you to Vanderbilt University Medical Center and the Microtia and Atresia Clinic
And thank you to Medtronic for being a part of our special events! – Alpha 2 MPO E+ with rechargeable batteries.
Filed Under: Events, History

Cochlear partners with Ear Community to support hearing loss advocacy efforts

May 30, 2019 By Leave a Comment

The Cochlear Americas team with Melissa Tumblin and Cynthia Stewart of the Ear Community Organization during the Ontario, Canada picnic.

In 2009, Melissa Tumblin’s daughter, Ally, was born with her right ear only partially formed with no sign of an obvious ear canal. Diagnosed with microtia and atresia, Melissa was frustrated and confused by the lack of information and support available to her family. Read how Melissa’s passion to find answers and fight for her daughter’s right to hear has blossomed into a full-blown advocacy effort for children everywhere suffering from hearing loss:

Creating a community

At the time of Ally’s birth, there wasn’t enough information available about options for children born with hearing loss. So, Melissa embarked on her mission to gather and share information about resources and options by establishing the Ear Community. During early childhood, hearing is critical to a child’s development and can impact their speech, balance and even social skills. Due to financial constraints, many children born with hearing loss may not receive early intervention support and hearing devices that could help them during this stage of their lives.

What initially began as a Facebook support page in 2010 eventually established itself as a non-profit organization in 2012 called Ear Community. This organization provides support, resources, information and guidance to families around the world who are living with microtia and atresia, hemifacial microsomia, Treacher Collins syndrome and Goldenhar syndrome.

“I wanted to find a way to help promote educational awareness about microtia and atresia in hopes of making things easier for the next family who has a child with these conditions. I wanted to help families and individuals learn more about hearing loss and how to better understand the effects hearing loss can have on individuals and their lives. Also, I wanted to help families connect with each other so they can share experiences with one another,” said Melissa Tumblin, founder of Ear Community.

“It is very important to realize that none of us are alone because we all have each other now.”

Taking on Capitol Hill

Over the years, Melissa has expanded her advocacy efforts and is now taking on the insurance industry on Capitol Hill. In February 2019, Melissa led a group, including eight Ear Community families, to Washington, D.C. for Capitol Hill Advocacy Day to advocate for insurance coverage for bone conduction hearing devices and for dental and craniofacial research funding. The group met with United States Congress legislative staff members from Washington, Tennessee, Colorado, Maryland and Virginia.

 

Ear Community Advocacy Day group in front of U.S. Capital

“We reminded them that insurance companies are discriminating against thousands of children and adults with hearing loss,” said Tumblin. “It doesn’t make sense why one type of hearing device is covered, but not another.”

As part of its mission to support people suffering from hearing loss, Cochlear has partnered with Ear Community to help advance their advocacy efforts. Cochlear provided BahaⓇ  5 Sound Processors with Softband for legislative representatives to put on and listen through during their meetings with the Ear Community group. The Baha Softband is designed to provide children with conductive hearing loss, mixed hearing loss, or single-sided sensorineural deafness (SSD) with the hearing performance and amplification they need to facilitate language development on par with their hearing peers. The Baha Softband, along with the Baha SoundArc, is the first step in providing hearing to children under the age of five or those not yet ready for a bone conduction implant.

Mazie H, a Baha 5 recipient, attended Advocacy Day with the Ear Community group to show legislators how she is benefitting from a device that her insurance would not cover. She received her Baha device through Ear Community when her insurance provider in the state of Virginia denied coverage of a bone conduction hearing device.

 

Mazie H. with U.S. Congresswoman Abigail Spanberger from Virginia

Through her advocacy efforts, Melissa hopes to change legislation to mandate nationwide coverage of bone-anchored hearing devices by insurance. The children that Ear Community advocates for do not have the same hearing loss that qualifies for wearing a cochlear implant or a traditional hearing device. Thousands of children and adults suffering from hearing loss are not receiving the devices they need. Due in part to insurance companies are not mandated to cover them.

“I started discovering that thousands of families were asking the same questions and I didn’t feel that was acceptable, so that became my drive. I’ve learned to help as many people I can the best way I can. There was an opportunity for someone to step up and I guess that person was me,” said Tumblin.

In addition to her advocacy efforts on Capitol Hill, Tumblin also sits on the Patient Advocacy Council for the National Institute of Dental and Craniofacial Research.

 

At the Ear Community Advocacy Day, children with “Stranger Things” actor Gaten Matarazzo

Ear Community Picnics

Ear Community hosts picnics each year to help bring together microtia and atresia families from around the world. They offer a unique opportunity for families to share experiences and make new friends with those going through similar experiences.

Medical professionals, such as microtia and atresia repair surgeons, anaplastologists, ENT specialists, audiologists and therapists, along with world-leading hearing and medical device companies, come together to help educate attendees on the latest and greatest in each of their respective fields. Cochlear demonstrates bone conduction hearing devices at the picnics to give attendees the opportunity to learn about and try on the latest bone conduction hearing technologies.

 

Since the first picnic was held in Denver in 2011, Cochlear has partnered with Ear Community to host up to seven picnics each year as part of Cochlear’s commitment to helping people with hearing loss live a life without limitations. To date, there have been nearly 60 events, bringing thousands of people together from all over the world.

“The picnics are golden,” said Tumblin. “They are free thanks to our partners, like Cochlear, and they change lives forever. We embrace our community and embrace the companies that support our mission.”

Read more about how Cochlear bone conduction solutions, both implantable and non-surgical, are helping to transform and improve quality of life for children living with hearing loss.

2019 Ear Community Picnic Schedule

This year, there are a total of seven picnics taking place across the United States and Canada. The 2019 picnic lineup is included below. For more information or to register for these events, visit: https://earcommunity.org/events/2019-picnics-and-events/.

Fullerton, California
Date:  Saturday, June 15th, 2019
Time:  11AM to 3PM

South Bend, Indiana
Date:  Saturday, June 29th, 2019
Time:  11AM to 3PM

Boston, Massachusetts
Date:  Saturday, June 29th, 2019
Time:  11AM to 3PM

Broomfield, Colorado
Date:  Saturday, July 13th, 2019
Time:  11AM to 3PM

Nashville, Tennessee
Date:  Saturday, July 20th, 2019
Time:  1PM to 5PM
* This Ear Community picnic will be in collaboration with a FREE surgeon conference that will take place at Vanderbilt University Medical Center.

West Orange, New Jersey
Date:  Saturday, August 3rd, 2019
Time:  11AM to 3PM

Hamilton, Ontario – Canada
Date:  Saturday, August 17th, 2019
Time:  11AM to 3PM

Click here for this full blog by Cochlear Americas.

Cochlear Guest Writer

Cochlear Americas showcases the stories of real people celebrating life’s real moments. This blog was written by a guest writer for Cochlear Americas. For more information on the guest writer, please see read above.

Filed Under: Events, History

New Oticon Medical Ponto 4 Brings Open and Balanced Sound Experience to Bone Anchored Users For the First Time

May 14, 2019 By Leave a Comment
May 13, 2019

New Oticon Medical Ponto 4 Brings Open and Balanced Sound Experience to Bone Anchored Users For the First Time Share:

Groundbreaking Sound Processor Is The Smallest Bone Anchored Device On The Market

                                           Oticon Medical Ponto 4

SOMERSET, NJ   May 13 – Oticon Medical announced today that it has obtained 510(k) clearance from the U.S. Food and Drug Administration (FDA) to market the new Ponto 4, a small and high performing sound processor that marks a significant breakthrough in bone anchored hearing care. Ponto 4 will officially launch in the US in early summer 2019.

“With Ponto 4, Oticon Medical enters a new era by bringing the largest improvements for bone anchored users in many years,” says Jes Olsen, President of Oticon Medical. “The introduction of Ponto 4 and the Velox S™ platform signals a paradigm shift in bone anchored hearing. Many users around the world have already had their lives changed by the groundbreaking technology in Oticon Opn™ and Oticon Opn S™ hearing aids. Now, we combine Oticon Medical’s know-how in bone conduction hearing with the newest state-of-the-art technology from one of the world’s leading hearing healthcare groups.”

Fast, efficient management of multiple sound sources 

Built on the unique Velox S™ platform, Ponto 4 delivers fast and precise sound processing for an open soundscape and noise-optimized listening experience. The groundbreaking OpenSound Navigator™ analyzes the sound environment more than 100 times per second to balance the sound sources and attenuate noise even between words. Users enjoy an open and balanced sound experience.

“With Ponto 4, we are moving away from using directionality as we know it. The OpenSound Navigator handles multiple speech and noise sources in a new, fast and efficient way. It balances the environment and targets noise to a much higher degree that we have been able to before. We feel proud and confident that this will make a huge difference in the ability of bone anchored users to follow conversations and keep up with the dynamics of life,” says Olsen.

Small size and wireless connections 

The small and appealing Ponto 4 is the smallest bone anchored device on the market, 27% smaller than Ponto 3. The all-new design is built on the hallmark of Ponto reliability and durability to stand up to everyday life.

Ponto 4 will also bring world-first advancements in wireless capabilities to the bone anchored field. Through a unique Oticon cloud solution, the web-based service IFTTT (If This Then That) and the Oticon ON App are used to unlock a world of potential for connected device communication. Users can program connections between their sound processor to a range of devices and services, for example ”smart” doorbells, smoke detectors and baby alarms. “The Internet of Things brings endless opportunities for Ponto 4 users,” says Olsen. ”What we see now is just the starting point of a future of connected hearing care. The launch of Ponto 4 means bone anchored users can be part of this journey.”

For more information on Oticon Medical and the new Ponto 4 sound processor, visit www.OticonMedical.com.

Filed Under: Events, History

Alyssa Tumblin is honored as a HearStrong Champion for advocating for others with hearing loss

May 8, 2019 By Leave a Comment

Alyssa Tumblin, 2019 HearStrong Champion (Denver, CO)

On Thursday, May 2nd, in Denver, CO, Alyssa Tumblin, Co-Founder of the Ear Community Organization, was honored as a HearStrong Champion by President, Ed Keller, of the HearStrong Foundation. Ally was recognized for being an amazing advocate for helping educate other children who also have hearing loss and helping them realize that they are not alone and can be anything in life, even with hearing loss and wear hearing aids. Ally was asked a series of questions in addition to why she likes wearing her hearing aid and her response was “because it helps me hear better.” Ally was honored with a beautiful ceremony and dinner with over 100 Audiologists, hearing specialists, and hearing device manufacturer representatives including EarQ and Oticon, Inc. Vice President of Oticon, Inc., Rasmus Borsting, awarded Ally her gold medal as a HearStrong Champion and was delighted to meet the Tumblin Family and hear their story. Ed Keller also asked Ally’s mom, Melissa Tumblin, to speak about the Ear Community Organization and to share their story about Ally’s journey with unilateral hearing loss (aural atresia) and microtia.

Rasmus Borsting (VP of Oticon, Inc.) awarding Ally with her HearStrong gold medal.

 

Melissa Tumblin spoke about how unilateral hearing loss is an invisible disability and how “one good ear is not always good enough.” She explained how “everyone’s hearing loss experience is unique because of how our brains manage our hearing loss differently.” Melissa also shared some key take-a-ways of what she and Ally have both learned, together, on their road with hearing loss and how they utilize this learned information and share it as helpful knowledge with others. Melissa said one of the highlights of the night was meeting a team of audiologists from the Grand Cayman Islands who work for Cayman Hearing Center in George Town. Dr. Stine Lawton-Smith and Katie (Cayman Hearing Center’s patient care coordinator) shared how they knew all about the Ear Community Organization and how they help share our organization’s information with their patients who have Microtia and Atresia. There were hugs, tears of joy and laughter with these two as they genuinely appreciated the passion behind the Ear Community

The Tumblin girls with Dr. Stine Lawton-Smith and Katie (patient care manager) and her daughter of Cayman Hearing Center

Organization and meeting the Tumblin family. Ally and Melissa also met a couple of local audiologists from Colorado, including Dr. Meg Cates from Louisville, CO who was very excited to meet Ally in person and give her a big hug for all of her advocacy she has spread about Microtia and Atresia. Dr. Cates is looking forward to attending the Ear Community Microtia and Atresia picnic in Broomfield, CO this July.

Ally and Melissa Tumblin with Dr. Meg Cates of Hearing Solutions in Louisville, CO

This past February (26th), Ally along with her family and eight additional Ear Community families, advocated for hearing device insurance coverage during

Advocacy Day on Capitol Hill in Washington, D.C. For Better Hearing and Speech Month this may, as part of a homework assignment for Ally, she wrote letters to Congressman Joe Neguse and Senator Michael Bennet of Colorado, including Congressmen David McKinley and Mike Thompson, who sit on the Congressional Hearing Health Caucus, asking for their help with mandating hearing device coverage, nationwide. Especially, for bone conduction hearing devices, the kind of hearing device that Ally and thousands of children and adults who are just like her wear.

Here are some great memories from Ally’s special night!

Thank you,
The Ear Community Organization
www.EarCommunity.org

Filed Under: Events, History

Survey reveals hearing loss can significantly affect relationships and families in the U.S.

May 8, 2019 By Leave a Comment

 

 

 

 

EMBARGOED UNTIL MAY 1, 2019 AT 9:00 AM ET

Media Contacts
Renee Oehlerking Leslie Humbel
Cochlear Americas Edelman
303-264-2104 312-729-1781
roehlerking@cochlear.com
leslie.humbel@edelman.com

Survey reveals hearing loss can significantly affect relationships and families in
the U.S.

State of Hearing Report highlights the physical, emotional and societal challenges of hearing loss
Centennial, Colo. (May 1, 2019) — Three in four U.S. adults aged 65 years and older believe hearing loss is unavoidable and an inevitable part of aging, according to a new global report released to recognize Better Hearing and Speech Month in May.

The State of Hearing Report also highlights how hearing loss can affect a person’s day-to-day-life, self esteem and ability to communicate as their families feel the strain. In the U.S., 57 percent of respondents said it could cause social isolation and 86 percent said it could affect relationships. Sponsored by Cochlear, the global leader in implantable hearing solutions, the State of Hearing Report was a global survey to evaluate the challenges faced by people with hearing loss. Respondents in the U.S. included 1,269 adults, including 208 people aged 60 years and older. Notably, nearly 60 percent of people in the U.S. report having a close family member who has moderate to profound hearing loss, with more than one in three of those respondents stating that the hearing loss has had some level of impact on their communication.

“Results from the State of Hearing Report echo what physicians and advocacy groups who support those with hearing loss have known for many years – that hearing loss can have a profound impact on an individual’s personal, family and even professional life,” said Barbara Kelley, Executive Director, Hearing Loss Association of America. “These findings shine a spotlight on the serious need for additional education for the 48 million Americans who have some degree of hearing loss, but are unaware of options that will address their hearing loss and allow them to better function in their day-to-day lives.” Despite 95 percent of U.S. respondents recognizing that the ability to hear is important for overall quality of life, only 41 percent have had a hearing test in the last two years, the report reveals. Among U.S. respondents over the age of 65 years, 87 percent said they knew where to get their hearing tested, but only 50 percent had acted to do so.

“As a practicing cochlear implant surgeon, I see first-hand both the burden debilitating hearing loss can have on a person and their family, but also the apathy with which they manage it,” said Brian Kaplan, M.D., Chairman, Department of Otolaryngology and Director, Cochlear Implant Program, Greater Baltimore (Md.) Medical Center, and Cochlear Medical Advisor. “There are millions of people in the U.S. who could benefit from the use of a hearing device, such as a cochlear implant or hearing aid, and I hope that more education around the true effect of hearing loss will drive patients and providers to seek proper diagnostic testing and treatment.”

Hearing loss is a significant public health issue in the U.S. and around the globe. According to the World Health Organization (WHO), hearing loss affects 466 million people worldwide, 1 and one in three people over the age of 65 live with severe to profound forms of the condition.1 WHO figures also predict the total number of people living with hearing loss will nearly double by 2050, and this increase will be most noticeable amongst older people.1 Moreover, as the prevalence rates rise, the global cost of unaddressed hearing loss has been estimated at $750 billion per year.1 “At Cochlear, we are driven by our mission to improve the lives of people with hearing loss. There is increasing evidence of the importance of hearing to overall health, especially as people age,” said Patricia Trautwein, AuD, Vice President, Marketing and Product Management, Cochlear Americas. “With almost a quarter of people 65 to 74 years of age suffering disabling hearing loss, it is more important than ever to understand the impact of untreated hearing loss on people’s health, our communities and the economy to ensure people turn to treatment sooner.”

The research of Cochlear’s State of Hearing Report coincides with the launch of its Sounds Inevitable campaign, which highlights the misperceptions many people have about hearing loss being an inevitable part of aging, leading to irregular hearing check-ups and delayed treatment.

About State of Hearing Report
The State of Hearing Report 2019 is the result of a five-minute, online survey among a representative sample of n=7,275 adults aged 18 year and older in five countries, including Australia, Germany, Japan, the United Kingdom and the United States. Important global trends emerged about perspectives of how hearing affects individuals and communities after speaking with more than 7,200 people, including more than 1,000 aged 60 years and older with hearing loss. In the U.S., the nationally representative cohort included n=1,061 general population respondents and 208 respondents aged 60 years and older. The survey was fielded between December 12-30, 2018.

About Cochlear Limited (ASX: COH)
Cochlear is the global leader in implantable hearing solutions. The company has a global workforce of more than 3,500 people and invests more than AUD$160 million each year in research and development. Products include cochlear implants, bone conduction implants and acoustic implants, which healthcare professionals use to treat a range of moderate to profound types of hearing loss. Since 1981, Cochlear has provided more than 550,000 implantable devices, helping people of all ages, in more than 100 countries, to hear. www.cochlear.com/us

References
1. World Health Organization. Deafness & Hearing Loss Factsheet. Available at https://www.who.int/news-room/factsheets/detail/deafness-and-hearing-loss. Please seek advice from your health professional about treatments for hearing loss. Outcomes may vary, and your health professional will advise you about the factors which could affect your outcome. Always read the instructions for use. Not all products are available in all countries. Please contact your local Cochlear representative for product information.

© Cochlear Limited 2019. All rights reserved. Cochlear, Hear now. And always, Nucleus, Baha, the elliptical logo and marks bearing an ® or ™ symbol, are either trademarks or registered trademarks of Cochlear Bone Anchored Solutions AB or Cochlear
Limited (unless otherwise noted).

Filed Under: Events, History
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