Helping Michael hear his best with his Oticon Medical Ponto 3 Superpower

April 12, 2018 By Leave a Comment

Michael Mitrovich receives his newly donated Oticon Medical Ponto 3 Superpower hearing device through Ear Community on April 4, 2018.  Pictured is Michael with his parents and Dr. Deedra Alford.

Ear Community is thrilled to introduce Michael Mitrovich.  Michael is only one year old, and has already had to fight some battles in his short time on this Earth.  He was born very tiny (only 4 pounds!) and was diagnosed with IUGR which is a whole slew of complications including not growing at a normal rate during pregnancy.  Michael was born with a cleft palate as well as other health issues on top of his little Right ear. Michael’s parents, Azziza and Matthew were overwhelmed and disheartened by Michael’s diagnosis and complications, not to mention the likelihood of him struggling to hear for the rest of his life.  That is when Azziza reached out to Ear Community.

Azziza was a mom on a mission, doing everything in her power to help her little boy have the very best chance at life that he could.  After being rejected by their insurance company for coverage for a bone conduction device, Azziza looked at other avenues to help little Michael hear. When she applied for a bone conduction device through Ear Community, she made sure to have all of her ducks in a row and even had Michael’s audiologist reach out to Ear Community the very day the application arrived!

Dr. Deedra Alford, an audiologist at Childrensent, a Pediatric ENT practice of Atlanta, was able to help get Michael his new Oticon Medical Ponto 3 SuperPower in just a matter of weeks!  On April 4th, 2018, Michael went to Dr. Alford’s office and had his brand new Oticon Medical Ponto 3 Super Power placed on his head.  His face lit up, and his parents could tell how much wonder he had at the new sounds he could hear. Ear Community would like to extend a very warm thank you to Dr. Alford, who not only donated her time to program and fit Michael’s device, but also requested an additional third year of services for his Ponto 3 SuperPower so that his family can rest assured that his Ponto is covered and will work to help him hear his best for a long time.  We would also like to thank Beverly Ostrowski of Oticon Medical for helping Ear Community give Michael the gift of sound by making sure his hearing device arrived at Dr. Alford’s office. For such a little boy, he has had to fight some big battles, and we are so excited for the opportunity to help him on his journey.

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the new Oticon Medical Ponto 3 Super Power hearing device to Ear Community so that they could be donated to little Michael to help him hear better from here on out. Thank you for everyone’s support and for helping Ear Community continue with its mission of helping individuals with Microtia and Atresia. Oticon Medical believes in helping individuals with hearing loss so that they can live a better quality of life. Oticon Medical is a well-respected international hearing device manufacturer that is a part of the “William Demant Group [which has] 100-plus years of experience in audiology and sound processing and established manufacturing and logistics infrastructure.”

Michael, the world is at your feet and you have an entire lifetime to learn, grow, and enjoy the beauty this world has to offer.  Thank you for giving Ear Community the opportunity to help you have equal access to sound, we hope you enjoy all the wonderful sounds around you as you grow into the little person you are meant to be!

We’re all so proud of you Michael!
Ear Community Board Members
www.EarCommunity.org

Filed Under: Events, History

Helping Sesethu celebrate sound in South Africa with her new Oticon Medical Ponto 3 Superpower hearing devices

April 12, 2018 By Leave a Comment

Sesethu Myakade, age 12, born with bilateral microtia and atresia in South Africa wearing her (2) newly donated Oticon Medical Ponto 3 Superpowers, April 4th, 2018

Meet Sesethu Myakade from South Africa.  Sesethu is 12 years old and was born with bilateral Microtia and Atresia. While she is surrounded by much love from her family, she has lost both of her parents in recent years and lives with her Aunt now.  Sesethu struggles to hear her family and friends communicating and to hear all of the sounds that surround her every day.

Sesethu’s family was able to make contact with a wonderful organization in South Africa called Give An Ear Foundation, and reached out to Viola Nwadike, the Founder, and asked for help for Sesethu.  Viola was familiar with the Ear Community Organization in the United States and knew how Ear Community also helps children born with Microtia and Atresia from all over the world obtain hearing devices.  So, Viola applied on behalf of Sesethu in hopes of helping her hear better. Through the help and commitment of both the Give An Ear Foundation and the Ear Community Organization, both nonprofits were able to find help for Sesethu, together.  The Ear Community Organization and Give an Ear Foundation contacted Innocent Mbambani of the Operation Smile South Africa who made the arrangements for Sesethu to make it to the audiologist to have her brand-new Oticon Medical Ponto 3 SuperPower hearing devices programmed and fitted.

On April 4th of 2018, just after Easter, Sesethu traveled to Claremont Audiology with Operation Smile to receive Sesethu’s new Oticon Medical Ponto 3 SuperPower hearing devices that were donated through the Ear Community Organization.  Ear Community wishes to thank Ceri Soulsby (Audiologist) for donating her time and services to help fit and program Sesethu’s newly donated Oticon Medical Ponto 3 SuperPower hearing devices and streaming device.  Kaylini Naidoo of Oticon Medical was very involved in helping Sesethu receive her Ponto’s, and while she was unable to attend the fitting, she made sure that Sesethu was taken care of by Dr. Soulsby.

The saying, “it takes a village” truly fits Sesethu’s situation.  With no parents to advocate for her, Sesethu has been able to be cared for by so many in her life.  Her sweet Aunt who has supported her through this journey.  After 12 years of waiting to be able to hear, finally Sesethu was given this miracle to hear life around her and be able to celebrate.  Thank you to Viola Nwadike in facilitating much of the behind the scenes.  Thank you to Dr. Ceri Soulsby who made sure that Sesethu’s (2) Oticon Medical Ponto 3 SuperPowers were programmed to give Sesethu optimum sound.  Thank you to Innocent Mbambani who helped Sesethu get to the appointments she needed, Kaylini Naidoo from Oticon Medical who has helped every step of the way and thank you to Beverly Ostrowski of Oticon Medical (US) for making sure Sesethu received her stuffed Oticon Medical monkey and some fun treats.  The many others who have worked hard to help Sesethu hear better rejoiced on April 4th and were touched to see her face when she could hear through her new Pontos.  She was thrilled when her brand-new Ponto 3 SuperPowers were turned on and place on her head, her face lit up and everyone in the room could see and feel the joy coming from Sesethu. Viola Nwadike thanked everyone who had made it possible and worked so hard for Sesethu to be able to have access to sound.

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the new Oticon Medical Ponto 3 Superpower hearing devices w/streamer to Ear Community so that they could be donated to Sesethu to help her hear better from here on out. Thank you for everyone’s support and for helping Ear Community continue with its mission of helping individuals with Microtia and Atresia. Oticon Medical believes in helping individuals with hearing loss so that they can live a better quality of life.

Thank you again to everyone who was involved in helping change Sesethu’s life!  Here’s to not missing a beat Sesethu…. everyone is so happy for you to be hearing so much better now!  You deserve to hear sweet girl.

Congratulations Sesethu!
Ear Community Board Members
www.EarCommunity.org

Filed Under: Events, History

2018 EHDI Family Leadership Award is awarded to Melissa Tumblin of Ear Community

April 11, 2018 By Leave a Comment

 

 

 

 

 

 

On Monday, March 19th, 2018, Melissa Tumblin, Founder and Executive Director of the Ear Community Organization, was awarded the 2018 Family Leadership Award for EHDI Excellence in Denver, Colorado.

Melissa Tumblin is an advocate for promoting educational and public awareness about Microtia/Atresia (M/A) and hearing loss as prompted by her daughter’s condition. She is an influential community leader, providing people with support and connection. Her contributions have led to overall improvement of the EHDI service system.

Due to Melissa’s contributions to the M/A community, those who are affected by these conditions know of the options available to make the best decisions regarding child care, early intervention, and other services. Melissa founded the largest global support group on Facebook for families affect by M/A and founded the Ear Community, a non-profit devoted to empowering families as they advocate for the needs of their children with M/A. In addition, Melissa worked tirelessly to get November 9th as a day to raise awareness and support for M/A. Melissa has worked to help bridge the gap between those with M/A and medical professionals. To this end, she is a co-investigator, along with researchers from Harvard and Vanderbilt, on a research grant for studying genetic factors in M/A. Melissa also works with early interventionists to help them understand what technologies are available to help children with M/A.

Melissa provides astonishing support to those with deaf or hard of hearing children. Melissa has served as a member of the Board of Directors of Hands & Voices in Colorado and of the Family Advisory Council for the D/HH group at Children’s Hospital. She is an active member in IEP meetings, helping families through the process of enrolling their children in educational settings where they are most likely to succeeded.

Melissa works across the globe to raise awareness of M/A and hearing loss and has presented at numerous medical and hearing-related conferences. In addition, Melissa has delivered webinars through Audiology Online. Lastly, Melissa has received several awards including Oticon’s Advocacy Award.
________________________________________________________________________________________
2017 was the inaugural year for the EHDI Family Leadership Award. During the last several decades it has become increasingly clear that EHDI only exists to improve the well-being of babies and families. Symbiotically, engaged families are central to the success of EHDI programs and more specifically to the success of children who are deaf or hard of hearing.This award honors a parent or family member of a child who is deaf or hard of hearing for providing exemplary leadership in their state EHDI system and whose leadership has led to improved outcomes. The recipient was selected by NCHAM’s Family Advisory Committee.- The EHDI Organization
Dr. Karl White
www.ehdimeeting.org

Filed Under: Events, History

Ear Community promotes awareness at the Colorado State Capital

April 11, 2018 By Leave a Comment

 

 

 

 

 

 

 

 

 

 

On March 21st, 2018, Ear Community board members, Melissa Tumblin and Scott Newcomb, raised awareness about Microtia and Atresia at the state capital here in Denver, Colorado.

Filed Under: Events, History

Ear Community kicks off its 2018 Microtia and Atresia summer family picnic line up

March 8, 2018 By Leave a Comment


Ear Community is proud to announce our summer picnic locations for 2018.

California Ear Community Picnic
Sacramento, California
Date:  Saturday, June 23rd, 2018
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityCaliforniaPicnic@gmail.com

Texas Ear Community Picnic
El Paso, Texas
Date:  Saturday, July 21st, 2018
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityELPasoPicnic@gmail.com

Tennessee Ear Community Picnic
Nashville, Tennessee
Date:  Saturday, July 21st, 2018
Time:  1PM to 5PM
RSVP to Melissa at:  TennesseeEarCommunityPicnic@gmail.com
*  This picnic is in collaboration with an educational surgeon conference hosted
by Vanderbilt University Medical Center and the Monroe Carell Jr. Children’s
Hospital along with the Microtia and Atresia Clinic.

Ontario Ear Community Picnic
Hamilton, Ontario – Canada
Date:  Saturday, July 28th, 2018
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityCanadaPicnic@gmail.com

Ohio Ear Community Picnic
Cincinnati, Ohio
Date:  Saturday, July 28th, 2018
Time:  11AM to 3PM
RSVP to Heidi at:  OhioEarCommunityPicnic@gmail.com

South Carolina Ear Community Picnic
Charleston, South Carolina
Date:  Saturday, August 11th, 2018
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityCharlestonPicnic@gmail.com

A special thank you to our Platinum Sponsors:
Cochlear Americas and Oticon Medical
– To learn more about the Cochlear Americas Baha 5 Attract, Connect, and Power, click here.
– To learn more about the Oticon Medical Ponto, Ponto 3 Power, and Ponto 3 Superpower, click here.

A special thank you to our Silver Sponsors:
MED-EL and Stryker CMF
– To learn more about the MED-EL ADHEAR, click here.
– To learn more about Medpor by Stryker CMF, click here.

Thank you to Medtronic ENT for helping educate families about the Alpha MDO at our picnics!
Thank you to Vanderbilt University Medical Center’s Microtia and Atresia Clinic and to the Monroe Carell Jr. Children’s Hospital for hosting our conference each year!

Ear Community hosts picnics every year around the world helping bring Microtia and Atresia families together.  This year’s picnics will take place in the United States in Sacramento, California/ El Paso, Texas/ Cincinnati, Ohio/ Nashville, Tennessee/ Charleston, South Carolina/ and in Canada in Hamilton, Ontario!  It is very exciting for many families! Everyone enjoys attending our picnics and our Ear Community picnics always offer such a wonderful opportunity for Microtia and Atresia families to come together, share experiences with each other, and maybe even make a new friend.  Medical professionals such as world renown Microtia and Atresia repair surgeons, anaplastologists, ENTs, audiologists, and therapists along with the world’s leading hearing device and medical device companies all come together to mingle with us at our picnics, helping educate us on all of our options including hearing loss.

* A special thank you to Ear Community’s amazing sponsors!  Without the support from our sponsors, our Microtia and Atresia summer family picnics would not be possible.  Thank you to each and every one of our donors for also supporting our organization’s mission so that Ear Community can continue helping even more Microtia and Atresia families.

We look forward to seeing everyone at our Ear Community picnics this year!

Ear Community,
Find us on Facebook at the Microtia and Atresia Support Group

Filed Under: Events, History

Ear Community shares patient testimonials about Microtia and Atresia during a listening session at the FDA

March 2, 2018 By Leave a Comment

Ear Community presents at the FDA during a listening session on Monday, February 26th, 2018

On Monday, February 26th, 2018, Ear Community members went before the FDA during a listening session to share our stories about Microtia and Atresia, asking for any newer technology for ears to be approved sooner than later. We shared our stories of worry, fear, concern, bullying, job discrimination, surgical complications, low self esteem and lack of self confidence, along with triumphs and surgical successes and finding happiness in who we are as parents and individuals who are affected by this rare congenital deformity that does not discriminate.

Ear Community was the first nonprofit organization with a rare cause that was scheduled to present at the FDA on the first day of Rare Disease Week, which is now recognized by the FDA, making our testimonials even more special for the FDA attendees who were in our listening session. We had about 30 top level directors and division owners in our listening session representing multiple divisions of the FDA including Ophthalmic, and Ear, Nose and Throat Devices, Plastics and Reconstructive and Surgery Devices Branch, Division of Surgical Devices, Ear Nose and Throat Devices Branch, Office of Tissue and Advanced Therapies, Rare Disease Program, Genetics, Pediatrics and Health Science Department, and Orphan Products.

This was a huge milestone for our Ear Community Organization, the individuals within our organization, and the Microtia and Atresia community, globally.

The following individuals were selected by Melissa Tumblin of Ear Community to be a part of our listening session as we shared our testimonials:

-Camilla N Gilbert, a 35 year old from Cincinnati, OH who was born with bilateral microtia and atresia who has chosen not to have surgery. Camilla shared her story about how she was bullied, attacked, and picked on while growing up because of being born without ears.  Melissa Tumblin has known Camilla and her family for 6 years now. Camilla was Ear Community’s first college scholarship recipient and the recipient of the Oticon Medical Focus on the Patient Award in which Ear Community nominated her for. Camilla is also a past Ear Community Board Member and the picnic host for our Cincinnati picnic for 2018.

– John Savage, a 25 year old from Aurora, CO, who was born with bilateral microtia and atresia who tried both prosthetic ears and currently has (2) Medpor ears.  John shared his story about his struggles in life with pain and scarring from prosthetic ears and complications with Medpor, including almost dying on the operating table because of having an adverse reaction to anesthesia following the procedure.  Melissa Tumblin has known John and his family for 8 years now after meeting his mom, Carol Savage, when her daughter, Ally, was just a baby. John is a hearing device recipient through Ear Community. John and his family have attended our Ear Community picnic in CO since 2011.

– Daniel Mendoza, a 17 year old from Houston, TX, who was born with unilateral microtia and atresia of his right ear who has rib graft surgery. Daniel shares his feelings about why he wanted an ear and how he feels about his rib graft ear today.  Daniel also shares how he recalls how his family would make many trips to the doctor while getting his rib graft ear made during the different stages of surgery.  Melissa Tumblin has known Daniel and his parents, Melanie and Nathaniel, for seven years now when Daniel’s family was trying to decide on which Baha Daniel needed as a hearing device. Melanie is a past Ear Community Board Member and a past Ear Community picnic host.

Roland Eavey, MD, Clinical Director of the Vanderbilt University Medical Center ENT and Otolaryngology Department and the Microtia and Atresia Clinic in Nashville, TN validated each patient testimony during the listening session and discussed how new technology could make a difference for children and adults who have Microtia and Atresia.  Melissa Tumblin has known Dr. Eavey for the past 5 years.  Dr. Eavey is truly a legend in the Microtia and Atresia world, one who has been involved with genetic research for Microtia and Atresia and reconstructive surgery for the past 30 years.

– And, Melissa Tumblin, Founder and Executive Director of Ear Community, mom to Ally, an 8.5 year old who was born with microtia and atresia of her right ear who has not yet had surgery from Broomfield, CO.  The Ear Community Organization was asked to go before the FDA to share patient testimonials during a listening session in hopes of newer technology becoming available for an even more amazing ear than what already exists today, an ear made of an individuals stem cells that could be printed to look exactly like the other ear utilizing 3D printing technology.  The organization looks forward to collaborating with the FDA on future research regarding newer technology becoming available in the near future.

This was an opportunity of a life time for each one of us and an amazing experience for all of us on our journey with microtia and atresia. Monday, February 26th, 2018 also marked the birthday of the Ear Community Founder’s mother, making the day even more special as Melissa Tumblin recalls her mother always wanted to give her daughter her ear, if she could.  So, all of this was absolutely meant to be! We are excited for our next steps as we wait to receive information to collaborate further with the FDA.

Thank you,
Ear Community
www.EarCommunity.org

Filed Under: Events, History

Cochlear Americas announces the release of the Baha SoundArc

January 22, 2018 By Leave a Comment

January 22, 2018

Media Contact

Renee Oehlerking
Cochlear Americas
303-264-2104
roehlerking@Cochlear.com

The new non-surgical bone conduction wearing option is designed for children who are not yet eligible or ready for an implant but need the first step to hearing

Centennial, Colo. (January 22, 2018) – Cochlear Limited (ASX: COH), the world leader in implantable hearing solutions, announces today the commercial availability of the new Cochlear™ Baha® SoundArc in the United States and Canada. The Baha SoundArc is an effective and stylish new wearing option 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.1

“We are happy to be adding to our broad portfolio of hearing options for children with the introduction of the Baha SoundArc,” said Tony Manna, President, Cochlear Americas. “Because each child’s hearing need is unique and may change over time, we are proud to be providing innovative and technologically advanced hearing solutions to fit a child’s lifestyle across the stages of their life.”

The new Baha SoundArc is a non-surgical, behind-the-head band that is an alternative to the Baha® Softband (released in 2002). The non-surgical wearing options are part of Cochlear’s bone conduction implant system, the Cochlear™ Baha® System. The Baha System utilizes the body’s natural ability to conduct sound to skip over the damaged parts of the outer and middle ear, sending clear, crisp sound directly to a working inner ear (the cochlea).2

The Baha SoundArc and the Baha Softband are designed to provide the same benefits and hearing performance and will work with one (unilateral) or two (bilateral) Baha® 5 Sound Processors. The new SoundArc provides a modern look, is lightweight, practical and easy to put on and take off. It fits securely and comfortably in place. The SoundArc comes in several sizes, is adaptable to fit different shaped heads and sizes, and it has a variety of soft colored tips to match hair, clothes or mood.

“All previous non-surgical devices have used the head or ears to aid in retention. With the Baha SoundArc, we needed to find a way to deliver excellent sound quality, power performance and fit different head shapes and sizes without compromising on comfort. This makes the SoundArc unique,” said Mats Dotevall, Director, Design and Development, Cochlear Bone Anchored Solutions AB.

The Baha SoundArc, along with the Baha Softband, is the first step in providing hearing to a child too young (under the age of five) or is not yet ready for the bone conduction implant. A bone conduction device can benefit a child with:

  • Conductive hearing loss, which occurs when damage to the outer ear or middle ear blocks sound vibrations from reaching the inner ear (cochlea). Common causes include malformations at birth such as microtia and atresia; syndromes such as Down, Goldenhar and Treacher Collins; chronic mastoiditis or middle ear infections; skin growth or cyst (cholesteatoma); skin allergies; draining ears; chronic ear infections; previous ear surgeries; benign tumors.
  • Mixed hearing loss, which refers to a combination of conductive and sensorineural hearing loss. This means there may be damage in the outer or middle ear, as well as the inner ear.
  • SSD, which occurs when there is little or no hearing in one ear, but normal hearing in the other ear. Common causes include viral infections; Meniere’s disease; adverse reaction to medications; head or ear injuries.

As a child grows, it is natural to progress from a non-surgical hearing loss solution to an implantable solution. A bone conduction implant improves the transmission of sound and ensures a child can benefit from consistent and reliable access to hearing.3

Whether a child is benefiting from a Baha non-surgical device or an implantable device, the child will have access to the industry’s smallest, smartest and most powerful head-worn bone conduction solutions with the Baha 5 Sound Processor portfolio.4,5 The Baha 5 Sound Processor portfolio provides users with the ability to hear better across noisy environments, connect wirelessly to a variety of electronic devices, direct-to-device wireless streaming and control with Made for iPhone technology*, and a personalized hearing experience with the Baha 5 Smart App**.

For adults struggling with conductive hearing loss, mixed hearing loss, SSD and any of the associated conditions, the Baha SoundArc can be used as a trial device to demo a Baha 5 Sound Processor and hear how it might sound before they make decisions to move forward with the Baha Implant System. With the SoundArc, testing a bone conduction device is now more appealing than ever before for an adult.

The United States Food and Drug Administration (FDA) has cleared and Health Canada has licensed the Baha System for implantation in children aged five years and older. The new Cochlear Baha SoundArc is CE marked, FDA cleared and licensed in Canada.

About Cochlear Limited (ASX: COH)

Cochlear is the global leader in implantable hearing solutions. The company has a global workforce of more than 3,000 people and invests more than AUD$150 million a year in research and development. Products include hearing systems for cochlear implants, bone conduction and acoustic implants, which are designed to treat a range of moderate to profound types of hearing loss.

Over 450,000 people of all ages, across more than 100 countries, now hear because of Cochlear. www.cochlear.com/us

For more resources to help a child with hearing loss, visit IWantYouToHear.com.
For more information on bone conduction implants, visit www.cochlear.com/us/mediacenter.

# # #

  1. Hol MK, Cremers CW, Coppens-Schellekens W, Snik AF. The Baha Softband. A new treatment for young children with bilateral congenital aural atresia. Int J Pediatr Otorhinolaryngol. 2005;69:973-80.
  2. Gustafsson J. BCDrive performance vs. conventional bone conduction transducer. Cochlear Bone Anchored Solutions AB, 629908, 2015.
  3. Flynn MC. Design concept and technological considerations for the Cochlear Baha 4 Attract System. Cochlear Bone Anchored Solutions AB, E82744, Nov 2013.
  4. Norrman, J, Review of fitting ranges. Cochlear Bone Anchored Solutions AB, D773528, 2015.
  5. Flynn MC. Smart and Small –innovative technologies behind the Cochlear Baha 5 Sound Processor. Cochlear Bone Anchored Solutions AB, 629761, 2015.

* Cochlear Baha 5 Sound Processors are compatible with iPhone 8 Plus, iPhone 8, iPhone 7 Plus, iPhone 7, iPhone 6s Plus, iPhone 6s, iPhone 6 Plus, iPhone 6, iPhone SE, iPhone 5s, iPhone 5c, iPhone 5, iPad Pro (12.9 inch), iPad Pro (9.7 inch), iPad Air 2, iPad Air, iPad mini 4, iPad mini 3, iPad mini 2, iPad mini, iPad (4th generation), iPod touch (6th generation) and iPod touch (5th generation) using iOS 7 or later.

** The Baha 5 Smart App works together with all Cochlear Baha 5 Sound Processors. It is verified on iPhone, iPad and iPod touch running iOS 9.1 and Samsung Galaxy S6 and S7 running Android OS 5.0 Lollipop. For more detailed device compatibility, see the Baha 5 Smart App description on App Store or Google Play.
©Cochlear Limited 2018. All rights reserved. Hear now. And always and other trademarks and registered trademarks are the property of Cochlear Limited or Cochlear Bone Anchored Solutions AB. The names of actual companies and products mentioned herein may be the trademarks of their respective owners.

Filed Under: Events, History

Sophia meets Sofia while coming together for the first time with Microtia and Atresia

December 24, 2017 By Leave a Comment

Sophia and Sofia come together…the start of an amazing friendship

Here is a warm story for the holidays…helping share the joy of being able to come together with other families who are in the same situation with Microtia and Atresia and realizing that you are not alone.  This is what Ear Community is all about and how our board members can also help other families.

On December 8th, 2017, in Indiana, Ear Community’s Board of Director member, Melissa Shamanski and her daughter, Sophia, found themselves overjoyed when meeting another family who had a daughter who was also born with Microtia and Atresia.  This little girl not only was Sophia’s age, but both girls happened to have the same name (Sofia)!  This was such a special day for both families coming together because Sofia (the sweet little girl and her family meeting with Melissa and her daughter, Sophia) had never met someone else just like her before with a missing ear.  In fact, Sofia’s mom hadn’t heard of the Ear Community Organization either.  So, when Melissa Shemanski and her daughter, Sophia, met with Sofia and her family, the were very excited for so many reasons!  Melissa and Sophia shared their experience so far with Microtia and Atresia and how Sophia is aided with the Cochlear Americas Baha and also wears a prosthetic ear.  Melissa also told Sofia’s mom all about Ear Community and began offering help and educating her about all of the options that are available today for individuals with Microtia and Atresia.   The girls were so happy to meet each other and hang out for the day together.  As a board member and a teacher, Melissa Shemanski was delighted to connect with Sofia’s this family and help offer some guidance about their options for Microtia and Atresia through Ear Community.  Sofia’s mom was touched that there was an entire community for children just like her daughter…she couldn’t believe it!

Sofia’s mother says, “I don’t believe in coincidence.  I believe we plan our steps, but it is Yah that orders them.  We prayed and waited for a day like this when Sofia’s question was “Mom, when will I meet someone who looks beautiful like me?”…would be answered!  Not only did both girls look alike, they share the same name (same initials S.S. too!)  And…both girls are less than one year apart in age.  A beautiful child raised by equally amazing parents.  I thank God on high for allowing us to meet!  We look forward to many more gatherings and wonderful times together, knowing we have each other and are not alone.”

Melissa and her daughter Sophia found out about Sofia and her family through a friend in common who was part of a local support group in their community…for something completely unrelated about Microtia and Atresia.  It is a small world.

We hope that so many families in our world are given the chance to come together where they can meet each other and share experiences.  This is the reason why we have our community.

Here’s to a heartfelt season of love, joy, and acceptance.  Happy Holidays and Happy New Year from all of us at Ear Community!
www.EarCommunity.org

Filed Under: Events, History

Second Annual National Microtia Awareness Day with the Ear Community Organization – November 9th, 2017

November 22, 2017 By Leave a Comment

National Microtia Awareness ribbon for the Ear Community Organization – November 9th, 2017

On Thursday, November 9th, 2017, the Ear Community Organization celebrated it’s Second Annual National Microtia Awareness Day that took place throughout the United States.  Families from all over were excited to raise awareness and help educate about Microtia and Atresia at schools, parties, the work place, and more.  Many medical professionals from Microtia and Atresia repiar surgeons, to ENTs, to dentists, blogged about our special day on social media.  Some of the medical facilities who were a part of our awareness day were Johns Hopkins, ReconstratA, Vanderbilt University Medical Center, Children’s Hospital Seattle, the NIH, the University of Michigan, Children’s Hospital of Philadelphia, AudiologyOnline, HealthyHearing, SuccessForKidsWithHearingLoss, and many more.  Many hearing device companies and medical device companies such as Cochlear Americas, Med-EL, Medtronic, Oticon Medical, and Stryker CMF (the maker of Medpor) socially blogged about National Microtia Awareness Day, celebrating in their offices and educating employees more about hearing loss and Microtia.  In fact, many amazing moments took place on this special day for families and individuals with Microtia and Atresia everywhere!  Hundreds of children and adults, with their families, submitted pictures online in their National Microtia Awareness Day t-shirts and/or wearing blue and black, celebrating and helping promote awareness.  Many changed their online profile pictures to our Ear Community awareness ribbon.  Many also changed their Facebook profile pictures to the beautiful official Microtia Awareness profile frame/boarder on Facebook that one of Ear Community’s families created (thank you to the Mitchell Family)!  Our Microtia Awareness FB frame was used over 1,300 times!  Excitement about celebrations everywhere were blogged on Instagram, Twitter, and Facebook.  Not only did families celebrate in the US, but from many countries all over….Canada, the Philippines, Ecuador, Peru, Argentina, Mexico, Australia, Malaysia, Denmark, the UK, Poland, Ireland, China, Israel, Indonesia, New Zealand, and many others.   Many from families from other countries are calling November 9th, International Microtia Awareness Day!  So many children shared a newfound confidence where they got up in front of their classrooms and talked about their ears and their hearing loss (while wearing their Microtia Awareness Day t-shirts) and explained why having an awareness day was so important to them.  Children and their parents educated about Microtia and Atresia and brought in treats to their children’s schools such as blue awareness cupcakes and frosted cookies.  Even families with newborns affected by Microtia and Atresia found hope and a sense of belongingness with everything being so new to them.  There were also a series of group gatherings that took place with Microtia and Atresia families coming together to celebrate on our special day.

Raising awareness on NMAD at an elementary school in Colorado.

In a press release by, Melissa Tumblin, Founder of the Ear Community Organization, she explains that “Approximately one child in every 9,000 (in the United States) is born with Microtia (when the ear(s) do not fully develop during the 1st trimester of pregnancy).  Often affecting one ear or both ears, Microtia is diagnosed at birth, but there is no understanding as to why Microtia occurs. Facial challenges, hearing loss and the longing for social acceptance are some of the daily concerns for those who are born with Microtia.  “Children are born into this world not knowing they are any different from anyone else. Many with Microtia share similar stories of curious stares, bullying, or awkwardness.  Individual personalities, social conditioning, available treatments and bullying all impact how every child develops and copes as an adult.  By removing unnecessary boundaries and replacing them with resources, tools, and support, we can eliminate bullying and clear the way for an even more successful future.”

November 9th is dedicated to spreading hope and knowledge concerning a congenital birth defect, which derives its name from the Latin terms for little ears.  Mark the calendar for Microtia Awareness Day for November 9th and think of the number 9 as the shape of an ear.  In an interview with AudiologyOnline, Tumblin was asked “Why was it so important to have a national awareness day created?  Tumblin stated, “It is the intention of Microtia Awareness Day to help promote public awareness.  As the mother of a child who has microtia, and the founder of Ear Community, my hope is that families who have new babies born with microtia will leave the hospital armed with more answers than questions, and their dreams for their children intact.  I think that if more people learn about microtia and atresia, that they will be kinder and more accepting.  It is also my intention for anyone who is born without an ear(s) to realize that they are not alone.  Through this national day, they can find out about organizations and resources for information and support.”  Since 2010, the Ear Community Organization has brought over 7,500 people together from around the world at the organization’s events making it possible to share experiences and resources. The community is made up of not only children and adults with Microtia and their families, but teachers, advocates, and medical professionals from around the world who foster awareness and assistance for this amazing group of people. Board members for Ear Community either have the condition themselves or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives.

Here are some amazing memories from our 2nd Annual National Microtia Awareness Day!
See everyone next year!
Ear Community
www.EarCommunity.org

Filed Under: Events, History

They say it takes a village…why giving the gift of hearing involves many hearts

November 22, 2017 By Leave a Comment

Someone once asked Melissa Tumblin, Founder and Executive Director of Ear Community, how can I help you?  Melissa responded, “I would like to help children who are deaf and hard of hearing, hear better.”  Melissa explained how she and her husband, Brent, inquired about a hearing device for their own daughter when she was born, but they were told that their daughter was not a candidate for a Cochlear Implant.  Almost one year later, Melissa and Brent discovered a hearing device that could have helped their daughter hear better since birth, called a bone conduction hearing device.  By this time, Melissa began noticing delays in her daughter’s speech…her daughter didn’t seem to be as vocal as other children her age.  Also, Melissa discovered that insurance did not always cover the hearing device for children under the age of five or during the critical years of development (when speech and language skills develop).  This was very disappointing and to realize how many other children in our world either do not have insurance to cover a hearing device or are not able to obtain hearing devices right away, during the critical years of development, that could help them hear better and begin speaking clearly.

When Melissa and the Ear Community Organization were given the opportunity to help children hear better by donating hearing devices to those in need, this was just the beginning.  Now, the organization had to find audiologists who were willing to help program the hearing devices for families who applied through the organization.  These audiologists also had to have the programming technology and software to also make this possible.  Not all of the audiologists for these family applicants were familiar with the equipment or software they needed.  When Oticon Medical wanted to help Ear Community help children hear better all over the world, a friendship and partnership developed that would help these children hear, together, but things are never easy.  They say it takes a village sometimes when trying to help others.  This is most definitely true.  Most of the time, good deeds can not always be carried out by just one person.  The help of many others is often needed in order to make things happen.

When Ear Community donates hearing devices to those in need who live abroad, the organization could not do this alone without the help of the many good hearts at Oticon Medical.  These good harts are in customer service, sales and marketing, and audiology.   When a hearing device is donated, we all work together to make it happen.  Alan Raffauf, Tine Schou, and Beverly Ostrowski make sure that Ear Community’s recipients have everything they need from the hearing device to helping Ear Community find an Oticon Medical rep to work with in that country we are donating to.  Ear Community then makes sure the hearing devices make it safely to their destination.  However, along the way Oticon Medical audiologists like Tove Rosenbom and international sales reps like Izovelle Piedad, Martin Moeller, Claus Horneman, Patrick Tan, and Kaylini Naidoo help get the right equipment and software involved.  Many times, Izovelle, Martin, Claus, Patrick, and Kaylini make time to help out with these donated hearing devices, donating their time to make sure the fitting and programming happen correctly.  There have been times when Oticon Medical reps are challenged with travel trying to get these hearing devices to their destinations because of security issues at some of the country boarders.  Tove Rosenbom, one of Oticon Medical’s audiologists, has also been very kind to donate her time to  help program some of these devices to help prepare for some fittings in advance when extra help is needed.  Regardless, each time an Oticon Medical Ponto hearing device makes it to a child in another country, helping them hear better, it is the result of multiple hearts coming together to make it all possible.  This process can often take weeks to months to carry out from beginning to end.

Together, Ear Community and Oticon Medical have donated 33 newly donated hearing devices to children living in India, Sudan, the Philippines, South Africa, Russia, China, Malaysia, and Peru.  When a hearing device makes it to another country to help a child hear better, the passion behind the audiologists, the sales and marketing team, and customer service is there because the individuals behind this kind of help want to do this and truly want to help give children the chance to hear and live a better quality of life.  During this season of thanks, Ear Community thanks everyone at Oticon Medical who have helped us to help so many children thrive in life because they can now hear better.  If it weren’t for the passion in these professional’s hearts to want to take that extra step to help children hear better, these lucky children would not be living life they way they were meant to.  This wouldn’t be possible without your help and passion behind helping those who are in need of hearing devices.  Ear Community is thankful for you Oticon Medical!  A special thank you to Jes Olsen, President of Oticon Medical in Denmark, for employing such amazing employees who truly care about helping children hear better.  Thank you!

Melissa Tumblin
Founder – Executive Director
Ear Community
www.EarCommunity.org

Filed Under: Events, History
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