Nashville, TN

Scott Stephan, MD (Vanderbilt University Medical Center – ENT), Kole Shuda, Melissa Tumblin (Ear Community), Ally Tumblin (Ear Community), Rachel Songy (Ear Community board member), Hailey Tumblin (Ear Community), Noelle Smith, Melissa McClellan (Ear Community board member) and Alejandro Rivas, MD (Vanderbilt University Medical Center – ENT).

The Hurley Family: Travis and Dayla w/ Brilee, Brooklyn and Brody along w/Melissa, Ally and Hailey Tumblin (Ear Community)

On Saturday, July 20th, the Ear Community Organization and Vanderbilt University Medical Center’s Microtia and Atresia Clinic hosted their 4th Annual Microtia and Atresia picnic together with nearly 200 attendees. Everyone enjoyed a lovely picnic day at the Vanderbilt University recreation center where the kids enjoyed getting their faces painted, balloon art, a magician and outdoor fun. Brody Hurley, along with his mom, Dayla, and father Travis, including his siblings Brilee and Brooklyn, helped host our picnic (patients of the Vanderbilt University Medical Center). The Hurley family shared their experience with Brody having bilateral Microtia and Atresia and their decision to aid and implant Brody with two bone anchored hearing devices to help him hear better. The Hurley family also shared with everyone how much Ear Community means to their family and how much the organization has helped them with resources and support. The Founders of Ear Community, Melissa, Hailey, and Ally Tumblin, also joined us at this year’s Ear Community picnic in Nashville. The Ear Community Organization (including the Tumblin Family and board members Melissa McClellan and Rachel Songy) honored the Vanderbilt MAC clinic and staff with an award recognizing the clinic as an international center for excellence and for helping so many Microtia and Atresia families.

Everyone enjoyed beautiful  music performed by Kole Shuda and Noelle Smith who were both born with Microtia and Atresia, which made everything even more special knowing that our children can go on to become anything they want to in life. Attending families were given the opportunity to try on hearing devices and learn about outer ear implants thanks to our Ear Community Sponsors:
Platinum Sponsors – Cochlear Americas (Baha 5) and Oticon Medical (Ponto 3 & 4) 
Silver Sponsors – Stryker (Medpor) and MedEL (ADHEAR and Bonebridge) and learn more about prosthetic ears and The Vanderbilt University Medical Center ENT staff (Drs. Eavey, Stephan, and Rivas, along with Dr. Stephens AuD, Scott Fiscus BCO) joined us wearing our “Vandy Microtia Kids Rock” t-shirts during our picnic portion of the event. Everyone enjoyed the day and we look forward to seeing so many of you again each year at our Vanderbilt University Medical Center Microtia and Atresia conference, clinic, and Ear Community picnic! Everyone also enjoyed a delicious picnic catered by Jim ‘N Nick’s BBQ.

Here are some fun memories from our Vanderbilt and Ear Community picnic event:

Wednesday – June 26th, 2019

Ear Community honors Dr. Jon Seidman with award at Harvard, 6/2019

Ear Community Founder, Melissa Tumblin (and her children Hailey and Ally) along with Samantha Sclafani (and her children Wyatt and Tatum) had the opportunity to meet with Drs. Jon and Christine Seidman of Seidman Labs at Harvard Medical School when hosting the Boston Ear Community Microtia and Atresia picnic. We also had the opportunity to meet with Barbara McDonough and Angela Tai, who are two of the very researchers working on our samples in the lab in regards to our whole genome sequencing research grant the organization is on.

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

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).

         The 4 grades of Microtia Atresia

Sometimes, children are born without one or both ears due to a congenital birth defect, known as Microtia. Hearing loss can also be associated due to underdeveloped or absent ear canals, known as Aural Atresia. In addition to Microtia and Atresia, some children may also be born with facial challenges, where one side of the jaw bone is shorter than the other due to craniofacial microsomia or hemifacial microsomia, causing a crooked smile. Children and adults who are born with Microtia and Atresia can live perfectly happy and healthy lives and can be anything they would like to be in life such as doctors, teachers, scientists, artists… even musicians just like the legendary rocker, Paul Stanley of KISS.

Living with Microtia and Atresia is not always easy though. There can be some challenges that come along with missing ears or little ears. Aside from the public stares that can hurt feelings and cause low self esteem issues and the curiosity behind questions which can come across as hurtful sometimes when asking about little ears, some children and adults with Microtia and Atresia quickly realize that life isn’t always easy trying to fit in. For some, they may struggle with their hearing due to hearing loss. It helps to be educated about your options regarding hearing loss and the different options of hearing devices or hearing loss repair surgery (Atresia repair) that can potentially help someone who has Microtia and Atresia hear better. Some individuals may choose to wear a hearing device because they notice how much of a difference it makes for them each day rather than continuing to struggle with their hearing loss and some individuals may not choose a hearing device because they are used to hearing through one ear and have gotten very good at finding helpful ways of positioning themselves closer to say a presenter near the front of the room or table, by reading lips or by learning to be more visually aware in their everyday environment. Some children and adults struggle to wear something as simple as eyeglasses because they may sit crooked on the face because one ear is missing. In fact, eyeglasses and sunglasses can’t be worn at all if both ears are absent. In addition to the struggle with eyeglasses and public stares, reconstructive surgery can be a great option to help someone living with Microtia and Atresia feel whole and be happier in life. Therefore, it is always important to know what surgical options are available if someone born with Microtia and Atresia is ever interested in having surgery for reconstructing an ear or choosing a prosthetic ear. It never hurts to educate yourself and learn as much as you can regarding what options are available that can maybe help you be your happiest.

One of the best options for someone living with Microtia and Atresia is to love and accept yourself as you are. Not everyone believes in surgery sometimes. To find that good circle of friends, have confidence in who you are (even if you are missing an ear or two) and try and be happy with yourself should always be at the top of the list. There are many people in our world who are missing something or have some kind of challenge the are struggling with. They do not let this define them. Love yourself and remember that not only are many people missing a finger or a leg or an arm or a hand, but they have still found a way to have a career and live the life they want. I am always impressed with the children and adults who are missing limbs and thanks to prosthetic arms and legs and feet, they can run and walk. So, sometimes while a challenge we may have may seem so devastating, it could always be worse. We are still very lucky because children and adults who have Microtia and Atresia are not only beautiful and perfect in every way, but so many love music and dancing and are making the best of their lives.

Last week, the Ear Community Organization’s Founder, Melissa Tumblin, was interviewed by a friend (Jen Allen) who wanted to help get the word out about what Ear Community is doing to help give back to the Microtia and Atresia community and to give Melissa a chance to share her family’s story and why she founded Ear Community nearly ten years ago to help other children and adults just like her daughter, Ally. Here is a great interview with Melissa sharing her experience and telling how her daughter, Ally, and Ear Community have helped so many with Microtia and Atresia.

_______________________________________________________________________
On Tuesday, April 23rd, legendary rocker, musician, and artist Paul Stanley “the Star Child” of the rock band KISS, spoke about his life with Microtia and Atresia in an interview with Dan Rather at 8/7c on AXS TV. Paul Stanley was born with Microtia and Atresia of his right ear just like my daughter, Ally. A few years ago, he also released a book that he wrote where he talks about his challenges and successes with Microtia and Atresia. An inspirational book about life and how to overcome personal struggles. So many of our children and adults who were born with Microtia and Atresia can be ROCK STARS in life just like Paul Stanley.
Thank you!
Everyone at the Ear Community Organization
www.EarCommunity.org

Here is interview clip and the article and Paul’s commentary from this interview:
https://www.facebook.com/theDanRather/videos/415313519253164/UzpfSTI0MDg1NzgwNzE1OjEwMTYxNzA3NjAwMDM1NzE2/

KISS’ Paul Stanley Reveals a Physical Deformity Pushed Him to Pursue Stardom

“I had what’s called a microtia, which is basically not having an ear,” Stanley told Dan Rather on The Big Interview

KISS frontman Paul Stanley is opening up about why a birth defect pushed him to chase stardom.

During a sit-down with Dan Rather on The Big Interview, Stanley, 67, says he pursued fame “as a way to compensate for a lot of insecurities.”

“I was born deaf on my right side and I had a birth defect. I had what’s called microtia, which is basically not having an ear. Having a crumpled mass of cartilage.”

According to the Center for Disease Control, microtia “happens when the external ear (the part of the ear that can be seen) is missing completely.”

Because of this Stanley says “I wasn’t very socially adept.”

“When you have something physical that sets you apart from people it makes you really a target of unrelenting scrutiny and sometimes ridicule. And, quite honestly, the idea of becoming famous was a way to push it in people’s faces and go, ‘You see, you should have been nicer to me,’” Stanley told Rather.

Although Stanley, aka Star Child, and the members of KISS grew to become legendary figures in music after forming the rock band in 1973 — he realized success wasn’t the answer to his problems.

KISS

Gabriel Olsen/FilmMagic

“I was fortunate enough to have success come to me and realize that didn’t change anything. So I was really blessed because, at that point in your life, it’s either a disappointment because it’s not a remedy and you either put a needle in your arm, a gun in your mouth or you live your life as a victim, and I’m not cut out for that,” Stanley explained.

“So, I decided that I would spend my life and my time on self-exploration and trying to make myself a better person and seeing where that was going to take me.”

“I was blessed to be a part of an idea to become the band we never saw and that led me on a course that I’m still on today — where it’s taking me God only knows,” Stanley said.

Stanley previously spoke of the years of bullying he endured because of his condition in his autobiography Face the Music: A Life Exposed.

Stanley echoed his sentiments in his conversation with Rather, saying “songs and groupies” didn’t change his insecurities.

“I couldn’t have written the book if it didn’t have a happy ending,” Stanley wrote. “The point really is, we can hide our secrets but we can never hide them from ourselves, and the only way to find happiness is to let go of those secrets.”

Back in 1982, Stanley underwent reconstructive surgery by Dr. Frederick Rueckert of New Hampshire, according to his memoir, Variety reported.

View image on Twitter

Paul Stanley

✔@PaulStanleyLive

My dear friend Dr. Frederic Rueckert has died at 95. He truly changed my life when he constructed my right ear from my rib. God Bless You.

1,491

6:41 PM – May 4, 2017

240 people are talking about this

Rueckert removed pieces of cartilage from Stanley’s rib cage and formed them into an ear. The surgeon died in May 2017.

“My dear friend Dr. Frederick Rueckert has died at 95. He truly changed my life when he constructed my right ear from my rib. God bless you,” Stanley wrote on Twitter following Rueckert’s death.

After 45 years in the business, Stanley and KISS members Gene Simmons, Tommy Thayer and Eric Singer announced their farewell tour — End of the Road.

“All that we have built and all that we have conquered over the past four decades could never have happened without the millions of people worldwide who’ve filled clubs, arenas and stadiums over those years,” KISS said in September.

RELATED: Paul Stanley of KISS Welcomes Fourth Child

Paul Stanley

Kevin Mazur/Getty Images

“This will be the ultimate celebration for those who’ve seen us and a last chance for those who haven’t.”

The tour officially kicked off on Jan. 31 in Vancouver.

In total, KISS has released 20 studio albums, eight live albums, and 13 compilation albums plus over 60 singles.

The band has been noted as America’s #1 Gold Record Award-winning group of all time, according to the band’s website. KISS was also inducted into the Rock & Roll Hall of Fame in 2014.

Stanley’s appearance on The Big Interview aired on April 23, 2019.

Thank you!
Everyone at the Ear Community Organization
www.EarCommunity.org

Karl Walsh, recipient of a donated Oticon Medical Ponto 3 Superpower donated by Quinn Kougl

Meet Karl Walsh, a little boy who was born with Microtia of his left ear along with hearing loss due to Aural Atresia. As Karl’s speech and vocabulary came in over the years, Karl’s mom, Gertie Walsh, began to realize that her son was struggling with his hearing. Gertie did her research and discovered that a hearing device called a bone conduction hearing aid could help her son hear better. After taking Karl to the audiologist, Gertie applied for a bone conduction hearing device through her insurance provider, but was denied coverage for this hearing device for Karl. Thankfully, Gertie found the Ear Community Organization who was able to help Karl obtain a gently used bone conduction hearing device.

On March 12th, 2019, Gertie Walsh reached out to the Ear Community Organization inquiring about information about Microtia and hearing loss. After being denied coverage for a hearing device for Karl, she was concerned that she would not be able to help Karl hear. To Gertie’s surprise, she was able to obtain a gently used Oticon Medical Ponto 3 Superpower hearing device that had been donated to the Ear Community Organization. On March 23rd, Karl received the gift of hearing thanks to a little girl named Quinn Kougl. Quinn was also born with Microtia and Atresia and Treacher Collins Syndrome. When Quinn passed away in December of last year, her family donated her hearing devices to Ear Community so that the organization could help another child in need. Thanks to Quinn’s left hearing device, Karl is now able to hear his best in school and in everyday life.

Quinn Kougl with her mom, Justine

Life has a way of bringing people together, often times helping others who are on a similar journey. While Quinn’s family is thankful that her hearing devices have gone on to help two children hear better, including Karl, Gertie is thankful that she found an entire community that has not only helped her with emotional support, but a community that helped her find hearing for her son. Gertie is grateful to have received the gift of hearing for Karl and she is thankful for the friends within the Microtia and Atresia community that she has made recently. Gertie explained that “on the day Karl’s donated hearing device arrived in the mail, she and Karl almost body tackled our mail carrier in excitement!” “Thank you to Ear Community and to Quinn’s family so much for this device. Quinn’s story touched our hearts so much… we are so grateful.” Gertie smiles every time she sees how well Karl can hear now and how much happier he is.

Thank you to Quinn and her family for donating their Oticon Medical Ponto 3 Superpower hearing device to the Ear Community Organization so Karl can hear better. Thank you also to Oticon Medical for donating a new soft band head band to Karl for his new Ponto 3 Superpower. Karl, we hope everyday is even brighter for you now!
All of us at Ear Community
www.EarCommunity.org