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:

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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 macrosomia, 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
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. Representative Abigail Spanberger from Virginia
Mazie H. with U.S. Representative 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.

 

Ear Community Advocacy Day children with "Stranger Things" actor Gaten Matarazzo
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

 

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.