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

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

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.

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

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

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