Hi Everyone! One of our support group members and a very dear friend of mine would like to share her story with all of us. Here it is:

Camilla Gilbert thanks the Ear Community Organization for helping her find confidence, a brighter future, and for finding a hearing device that is right for her.

Hi, My name is Camilla Gilbert.
I was born with a congenital deformity call Bilateral Microtia type III, whichaffected the outer ear not to fully develop. Furthermore Microtia affected my hearing due to the lack of an ear canal on both ears and I was categorized as a deaf person. Living with Microtia during my childhood, adolescence, and young adulthood years I developed low self-esteem, isolation, and confusion. Furthermore I did not want to associate with members of the deaf and Hard of Hearing culture because they were viewed as weak or impaired individuals within our society. I just wanted to be considered “normal” within the hearing world and this led me to cover my ears and hearing aid with a headband every day until the age of 26. However in 2005 I began to change my viewpoint of my deafness and investigated who I was as an individual.

Previously I never knew name of my condition, I just referred to it as being different and wore a hearing aid and my ears were closed. I began my quest by researching and analyzing information online to determine the name of my condition. After a few different searched online I discovered the medical terminology for my deformity, Microtia. This began the process of locating others in the area that was born with Microtia; this led me to Ear Community.
Ear Community is a non-profit organization that offers supportive community for individuals who were born with Microtia and other related conditions surrounded around hearing loss. Ear Community’s website provided me with helpful articles related to different surgery procedures, new technologies, and advocacy information. Furthermore I was able to connect with others who were blessed with Microtia all over the world. I accepted and was comfortable with living with Microtia and started reaching out to others through Facebook on the Ear Community page. This led to group discussions and empowerment for myself and to others.

Ear Community began to have different picnics over the world and in 2013 there was one hosted in Columbus, Ohio. I was excited to go and was in amazement when I arrived at the picnic. I was surrounded by others of all ages with Microtia just like me. Children were playing and parents were asking professionals and adults with Microtia for advice. I felt like a superstar at the event for a condition that I used to be ashamed of. During the picnic I was able to engage with my peers, which included an individual by the name of Justin Bays. During our conservation he educated me on different technologies options that Microtia individuals have; one included the Oticon Medical Ponto Hearing Aid Implant. I was already aware of this new technology however to see and interact with someone current uses the device and spoke highly of it was inspiring. I expressed my concerns about getting the device due to fear of having surgery but Justin Bays ensured me I would be fine and that I would be happy with the digital sound quality.

Ten months later in April I was in the surgery room getting my first Oticon Medical Hearing Aid Implant and got my second device in August of the same year. If I would have never gone to the Ear Community’s picnic in Columbus, Ohio surrounded by my Microtia peers I may have never had the courage to have the surgery. My experience at this group event changed my life for the better and was very memorable.

Thank you so much for sharing your story with us Camilla! It was great meeting you in Ohio two summers ago at our Ear Community picnic.  Camilla proudly wears the Oticon Medical Ponto Plus sound processor to hear life better because sound matters!  Camilla was also Ear Community’s first college scholarship recipient and her family is a big supporter of the Ear Community Organization.  Camilla is also a wonderful single mom too and is on her way to graduate school!  Justin Bays is a member of Ear Community’s Board of Directors.  Thank you Justin for passing on the information…you helped change someon’es life at our picnic!

We are so proud of you Camilla!
– Melissa Tumblin
Founder and Executive Director of Ear Community
www.EarCommunity.org

Santa Clause (played by Zach Gulley) hands out presents on December 20th, 2014 at the Toy Drive for Microtia and Atresia kids of Colorado through the Ear Community Organization.

On Saturday, December 20th, 2014, a toy drive for Microtia and Atresia kids of Colorado was made possible by Jeramiah Penaflor, Zach Gulley, Robert Brehm, Brian Caldwell, Dina Voiselle, and Gary and Dawn Penaflor for the Ear Community Organization. Santa, played by Zach Gulley – Managing Parnter for the Bert and the Beard radio station, put some pretty big smiles on 22 children on Saturday, all ranging in ages from 15 months to 16 years during his visit in Broomfield, Colorado at the Broomfield Community Center. Families mingled while listening to Christmas music as they enjoyed eating home made cookies (baked by Dawn Penaflor) with drinks. “It was especially fun to see Santa throwing the football around with some of the children, the smiles on their faces and the laughter was something really special to see that day,” said Melissa Tumblin, Founder and Executive Director of Ear Community. The children each received Christmas gifts from Santa that included basketballs, Lego sets, board games, necklace and bead kits, toy cars and fire trucks, block sets, and large stuffed animals just to name a few. In fact, these lucky children all received multiple gifts from Santa and really enjoyed spending the day with him and each other! Families had a great time watching their children play with each other and their new toys.

Pictured from left to right: Dina Voiselle, Jeramiah Penaflor, Santa Clause (Zach Gulley), and Robert Brehm help host an amazing day for Colorado Microtia and Atresia kids through the Ear Community Organization on December 20th, 2014.

Jeramiah Penaflor, Founder and Managing Partner for Mile High Salute, Rock Talk, Nuggets Gold Post, the Burgandy and Blue Crew, and Broncos Design, wanted to give back to a charity during the holiday season this year. Jeramiah contacted Melissa Tumblin asking if he and his colleagues could host a toy drive for the Ear Community Organization and help put some smiles on Microtia and Atresia kids faces. “It was a pleasant surprise to receive such a wonderful message from Jeramiah about hosting a toy drive for these children,” said Melissa Tumblin.  Jeramiah said, “this is something that he and his colleagues wanted to do, to give back to a charity during this time of year and make it fun for children.” Jeramiah’s daughter, Evelyn, was born with Microtia and Atresia and he knew that Ear Community would be the perfect organization for such a special event.

Robert Brehm, also Founder and Managing Partner for Mile High Salute, Rock Talk, Nuggets Gold Post, the Burgandy and Blue Crew, and Broncos Design, including the Bert and the Beard radio station, along with his family, made sure these lucky kids had plenty of presents from Santa. Between setting up toy drive bins around the North Metro Denver area and personally shopping at Walmart for Santa’s presents, Robert and his family, in addition to Jeramiah Penaflor, Zach Gulley, Robert Brehm, Brian Caldwell, Dina Voiselle, Gary and Dawn Penaflor, along with Brian Caldwell (Founding Partner and Manager of Broncos Design), made this all possible for these kids and did an amazing job working together, making sure everything went off without a hitch. They even got together to wrap all of the children’s presents the morning before our event so everything would be complete. “Our day with Santa was honestly a perfectly fun and rewarding day,” said Melissa Tumblin. “Seeing how hard Dina Voiselle, Jeramiah, Zach, Robert, Brian, Dawn and Gary worked to make this day possible brings joy to my heart…knowing how much they all wanted to do this for these children and how much they wanted to give back to the community through the Ear Community Organization warms my heart,” says Melissa.

Pictured left to right: Jeramiah Penaflor, Dina Voiselle, Robert Brehm, Santa (Zach Gulley) with Hailey and Ally Tumblin along with Melissa and Brent Tumblin, December 20th, 2014 Toy Drive for Colorado Kids with Microtia and Atresia.

Thank you to everyone who helped make our special day possible with Santa! A special thank you to Jeramiah Penaflor for not only choosing Ear Community as a charity to give back to this holiday season, but for also doing this for his daughter, Evelyn, and so many other children like her who are in the same situation.   Jeramiah, I hope Evelyn is proud of her daddy and knows what all you do for her and children in Colorado.  I hope Jeramiah and Santa’s team feel rewarded this holiday season for all that you have done for Ear Community’s children and their families. Thank you also to the Broomfield Community Center for donating our beautifully decorated room so we could have a nice place to share these wonderful memories together with Santa! Thank you everyone!

Here are the links to the amazing organizations that Jeramiah, Zach, Robert, and Brian head up:

All of us at Ear Community would like to wish everyone a very Merry Christmas and an even Happier New Year!
Thank you for such a wonderful year,

Melissa Tumblin
Founder and Executive Director of Ear Community
and
Ear Community Board Members
www.EarCommunity.org

Clark Witt, 7 months old, LMA, proudly wearing his donated Oticon Medical Ponto Pro from Kris Siwek.

In April of 2014, Max and Melissa Witt gave birth to a beautiful sweet baby boy named Clark. When Clark was born, he was originally diagnosed with having Goldenhar Syndrome and Hemifacial Microsomia. Clark was also born without his left ear due to having Microtia and a missing ear canal due to having Atresia, resulting in hearing loss. Clark’s parents did everything they could to provide him with proper healthcare prenatally. They had level 2 ultrasounds, genetic screenings, even a fetal echocardiogram, etc… However, it wasn’t until Clark was almost 2.5 months old (after birth) when Clark’s doctors discovered that his heart had a double aortic arch. Clark underwent heart surgery at just 5 months of age to fix his heart.

Baby boy Clark Witt following heart surgery, LMA.

With Clark’s parents focusing on his heart surgery and his recovery in the beginning of his life, Clark’s parents hadn’t had time to consider any potential speech delays or communication impairments because of his unilateral hearing loss. Clark’s mom, Melissa, says that “Clark has always made good eye contact since he was a week old and he has cooed since he was 2 months old. However, his coos haven’t changed (now at 7 months of age).” Melissa noticed when Clark heard sounds that he was looking toward his right (with his better hearing ear) and often looked around in confusion. When Melissa began wondering if Clark was having troubles hearing, she took Clark to an ENT to have him evaluated. Dr. James Thomsen (Pediatric Otolaryngologist) explained how hearing works on the speech banana diagram to Melissa and Max and that there are different frequencies and vowel sounds that may not be heard when there is a hearing loss, such as with unilateral hearing loss. Dr. Thomsen also explained how two ears help us to localize sound and when one ear doesn’t work very well, we can lose the ability to locate where sound is coming from. Max and Melissa realized Clark may be struggling with his hearing loss even though it is a unilateral hearing loss.

At six months of age, Max and Melissa took Clark to an audiologist where he was fitted with a loaner hearing device made by Oticon Medical called the Ponto Pro. Dr. Jennie Allen, Clark’s pediatric audiologist, told Melissa that Clark can wear this hearing device on a soft band head band. Melissa says, “For the first time, I can clap on his left side and he turns to the left side (not his right), noticing where the sound is coming from.” Melissa says, “I have done everything I can to help my son so far, and there is overwhelming evidence that a bone conduction hearing device will help Clark hear better.”

While trying to pay off medical bills from Clark’s heart surgery, Melissa applied for a bone conduction hearing device through their insurance provider, but were denied coverage for a BAHA. Dr. Jennie Allen informed Max and Melissa about a nonprofit organization called Ear Community that helps individuals born with Microtia and Atresia. Max and Melissa applied through Ear Community for a hearing device for Clark.

Melissa Tumblin, Founder and Executive Director of Ear Community, explains that “As a part of Ear Community’s mission to help children and adults born with Microtia and Atresia, one of our goals is to help children like Clark obtain hearing devices when in need.” Ear Community manages multiple support groups online, but one in particular was created to help families and individuals pay it forward and help donate gently used hearing devices to those in need of one. This particular Ear Community support group is called the “Ear Community Gently Used Bone Conduction Hearing Aids,” group. Melissa explains, “this support group gives BAHA users the chance to donate their gently used bone conduction hearing devices to someone who needs one, but cannot afford one. Members with used devices do not sell them on our group, but donate them, helping pay it forward and find a new home for their hearing device.”

Kristine Siwek pictured with her husband and their three beautiful children.

One of Ear Community’s support group members, Kristine Siwek, saw a post on our gently used group from Clark’s father looking for a BAHA for his son. With Thanksgiving season upon us and being the time of year to give thanks and to give back to our community, Kristine realized this was a wonderful opportunity for her to help give back and help little Clark hear better. After discovering that baby Clark’s hearing loss was in his left ear as well, Kristine knew this was meant to be. Kristine had perfect hearing until she turned 29 years old when she went deaf in her left ear as a result of a brain tumor (acoustic neuroma). Kristine says, “Until then, perfect hearing was something that I took for granted. I realize now, how lucky I am to have gone through schooling and the various sports I played without a hearing or balance deficit. It is one of the reasons why I feel so passionate about making sure children receive the support they need to develop, grow and thrive.” Knowing how a BAHA has helped Kristine regain her hearing, she understands the benefits of how her Oticon Medical Ponto Pro has helped her hear again with a unilateral hearing loss. Kristine explains, “As a mom of 3 toddlers, I know firsthand that I would do anything to help make my children’s lives easier, healthier and brighter. I am overjoyed to be able to help another family’s mission to do just that for their sweet baby boy! I am truly humbled by the endless support I have received the past four years since my hearing loss and I feel so honored to donate my Ponto Pro to Clark through Ear Community and give back to a community that can help a child hear better.”

When Max and Melissa discovered that Kristine wanted to donate her hearing device to Clark so he can hear better, they were overjoyed as well! Clark’s mother Melissa says “The Ponto Pro is the same model Clark has on loan from the ENT! He has had it for maybe 3 weeks on a one month trial basis and is responding so well. I hate the thought of taking it away from him. It’s just been a long year regarding medical expenses. This is amazing and perfect timing. Goldenhar syndrome affects so many systems, and the past 7 months have been full of expensive doctor appointments/surgeries and a lot of bad news. However, this gift has given much relief and provides optimism for us. We are so thankful for Kristine’s donated BAHA for Clark!”

When Oticon Medical found out about Kristine wanting to pay it forward by donating her BAHA to baby Clark, the organization wanted to make sure Clark had everything he needed. So, Oticon Medical donated a welcome package and care package for Clark with lots of BAHA accessories included.

Clark Witt, 7 months old, born with LMA, enjoying all of the sounds in his life wearing his Oticon Medical Ponto Pro hearing device that was donated by Kris Siwek.

“This is the true meaning of the Thanksgiving holiday,” says Melissa Tumblin. “It is the wonderful feeling of wanting to give back and pay it forward. The wanting to help others within our community and experiencing the good and thanks as a result of what we have done that has helped someone.” “This is what Ear Community’s mission is all about and we couldn’t be happier to be a part of these amazing experiences that happen through our foundation,” says Melissa Tumblin. A very special thank you to Kristine Siwek for finding a new home for her BAHA so that it could help Clark hear better! A very special thank you to Alan Raffauf, Oticon Medical’s Vice President of Marketing in the US, for donating the care package of accessories for Clark so that he has everything he needs. And….thank you very much to Max and Melissa Witt for being a part of our Ear Community Gently Used Bone Conduction Hearing Devices group, helping them find what they needed for Clark.

“All of us here at Ear Community are so very happy for Clark and Kristine during this Thanksgiving holiday and thankful that we were able to connect these two wonderful families so that they could receive the help they needed with the help of Oticon Medical,” stated Melissa Tumblin.

Here is the link to our Ear Community “Gently Used Bone Conduction Hearing Devices” group on Facebook: https://www.facebook.com/groups/EarCommunityDonatedHearingDevices/

Here is also the link to our primary Ear Community support group for Microtia and Atresia loved ones: https://www.facebook.com/pages/Microtia-and-Atresia-Support-Group/118851728152174

Happy Thanksgiving from all of us here at Ear Community and we are so happy for baby Clark! Ear Community is a 501c3 nonprofit charity organization that helps Microtia and Atresia families all over the world. Tax ID#: 84-1246756

Thank you always,

Melissa Tumblin
Founder and Executive Director of Ear Community
www.EarCommunity.org/donate

Santa Sent Me a Message!

Would you like your child to receive a letter from Santa Clause and a stuffed elf/reindeer this holiday season? If so, Ear Community has teamed up with the North Pole this holiday season to do this very thing! Please visit http://www.santasentmeamessage.com/personalizedletterearcommunity.html and put a smile on your children’s faces this Christmas season with a special letter directly from Santa!

Santa Sent Me a Message is offering a special deal for these orders!  Each order costs $15/ea instead of $35/ea in support of helping give back to our members and anyone who just likes what Ear Community is doing for Microtia and Atresia loved ones.

For every order, SantaSentMeAMessage.com has agreed to donate $1 to Ear Community! Together, Ear Community and Santa Sent Me a Message hope to spread lots of joy this holiday season and put lots of smiles on many beautiful faces!

Encourages Continuation of Awareness-Building among Key Groups and General Public

Oticon Medical logo

SOMERSET, NJ  November 5 –On October 31, the Centers for Medicare and Medicaid Services (CMS) announced via final rule that auditory osseointegrated implants (AOIs) are not hearing aids and therefore will remain a covered benefit for those Medicare enrollees with qualifying indications.

For Oticon Medical, the ruling reflects the success of a concerted effort by professional organizations, bone anchored hearing device providers, industry and advocacy groups to educate policy makers to the value of bone anchored implants in advance of proposed CMS changes to withdraw coverage for bone anchored hearing devices. It has also renewed the company’s determination to expand understanding and appreciation of bone anchored implants among medical and hearing care professionals, insurance providers, regulators and the general public.

“Friday’s decision by CMS is a victory for many new and existing users of Ponto and other bone anchored hearing solutions who will continue to have access to this proven and effective treatment for conductive or mixed hearing loss and single-sided deafness,” said Curt Gorman, President, Oticon Medical LLC. “Oticon Medical is proud to have contributed to the success of the collective efforts by mobilizing our resources and networks to drive awareness.  Now, we encourage everyone to build on the momentum of this victory to continue to expand awareness of the benefits of bone anchored implants.”

Oticon Medical plans to increase targeted outreach efforts that have actively engaged with professional groups to increase awareness of the newest advances in implant technology.  The company’s annual Scientific Conferences create unique opportunities to share and acquire new competencies, skills, theoretical foundations and methods with the potential to increase patient acceptance and satisfaction now and in the future.

Oticon Medical also works closely with advocacy and consumer groups to increase access to grassroots information about bone anchored implants for both professionals and consumers.  The company’s annual Patient Advocacy Summit brings together leading advocates and ambassadors to explore ways to enhance social media, networking, support groups and other means of disseminating information to better meet the needs of people with conductive and mixed hearing loss and single-sided deafness.

“We want to ensure that everyone who has the potential to benefit from bone anchored implants has access to the information and the support they need,” says Gorman. “As the success of the CMS initiative proves – by working together with our professional partners and consumer advocates, we have the power to open a world of sound to people through access to innovative implant solutions that improve quality of life now and in the future.”

To learn more about Oticon Medical and the Ponto System, a full range of bone anchored sound processors, wireless accessories, implant and surgical components, visit www.OticonMedical.com.

Randy Murray, age 65, born with Bilateral Microtia and Atresia proudly wearing his two new Cochlear Americas Baha 4 sound processors.

Meet Randy Murray, a 65 year old from Michigan City, Indiana who was born with bilateral Microtia and Atresia.  Randy has struggled most of his life with his hearing loss due to atresia (absence of ear canals).  Over the years, as he has gotten older, Randy’s hearing has begun degrading, causing him to struggle even more at work and in social situations.  Randy applied for a bone anchored hearing device through his insurance, Anthem Blue Cross Blue Shield, but his request for a hearing device was denied.  Randy did continue to appeal with his insurance provider and his appeal was denied as well, stating that Anthem Blue Cross Blue Shield “cannot say that [a Baha] is medically necessary for him at this time”….even though Randy has severe hearing loss in both of his ears.

Randy works as an assistant manager at a grocery store where he has been employed for forty eight years.  He is beginning to struggle with hearing his customers and his staff, while at the same time Randy says “if I do not get some kind of hearing aid, I will have to quit my job and be financially ruined.”  Randy’s wife, Diane, says that she really worries about him…“We cannot afford to purchase a hearing device out of pocket.”  Additionally, Randy says, “We cannot afford for me to not be working at this time either.”

While trying to figure out what to do for his hearing loss, Randy did visit with his audiologist, Dr. Steffanie Webber of the Franciscan Physician Network at Coolspring Health Center, to see what hearing devices are currently available.  Dr. Webber suggested that Randy try the Cochlear Baha 3 and when Randy did try on the Baha 3, he said “I was surprised at how much I could hear!”  “I heard her set her pen down on the desk and I have never heard that before.”  As you can imagine, after being denied by their insurance provider for the coverage of a Baha 3, Randy and his wife Diane were at a loss and were worried about Randy’s future, their future.

Luckily, Randy and Diane found the Ear Community Organization and applied for a hearing device for Randy.  “I do not want to lose my hearing and not be able to continue my lifestyle as it has been and lose my hearing completely without a hearing device to help me,” said Randy.  Both, Ear Community and Cochlear Americas believe in helping individuals hear better, especially if they have a severe hearing loss in both ears and are currently struggling with their hearing loss.  When Ear Community received Randy’s application, “Our board wanted to help Randy hear better so he would be able to keep up his lifestyle and keep his job,” said Melissa Tumblin, Founder and Executive Director of Ear Community.  Melissa explains that “a hearing loss is often an invisible disability and the public forgets how much of a struggle it is to function in everyday life without hearing…such as simply going to work and carrying on conversations with coworkers and customers.”  “We absolutely wanted to help Randy continue living his life by hearing everything in it and being happier.”

On September 25^th, 2014, Randy was fitted with two newly donated Cochlear Americas Baha 4 bone conduction hearing devices.  Dr. Steffanie Webber was happy to donate her time and services to help fit Randy with his new processors and program them for him.  Randy’s wife, Diane, is excited to start using the lapel microphone so she can carry on a conversation with Randy better throughout the house.  “It will make both of us much happier,” Diane said.

Ear Community is a nonprofit organization that helps the Microtia and Atresia community worldwide. Ear Community is so very thankful for the help that it receives and when other organizations come together to help Ear Community with its mission, to help children and adults born with Microtia and Atresia. “Thank you to Cochlear Americas for helping Randy live a better quality of life by donating two new Baha 4 processors so he can hear better at work, helping provide the customer service his customers expect from him and continue working his job” says Melissa Tumblin.

Ear Community would especially like to thank Kerri Lewandowski and Joanne Kernie of Cochlear Americas for donating two new Baha 4 processors to our foundation so Ear Community could help Randy hear better. “Cochlear is the global leader in implantable hearing solutions. It has a dedicated global team of more than 2,500 people who deliver the gift of sound to those with hearing loss in over 100 countries. Its vision is to connect people, young and old, to a world of sound by offering life enhancing hearing solutions. In 2013, Cochlear celebrates 100,000 Baha System users – all with unique stories of how being able to hear again has impacted their lives. The Cochlear promise of “Hear Now. And Always” embodies the company’s commitment to providing its recipients with the best possible hearing performance today and for the rest of their lives.”

From all of us at Ear Community…Randy, we hope you continue working for many more years to come, helping your customers the way you like to!

Thank you!
Melissa Tumblin
Founder and Executive Director of Ear Community
and
Ear Community Board of Director members
www.EarCommunity.org

Derek Dwyer, age 22, Bilateral Microtia and Atresia wearing his new Oticon Medical Ponto Plus system.

Meet Derek Dwyer, a 22 year old from Snellville, Georgia, currently attending Gwinnett Technical College. Derek was born with Nager Syndrome and bilateral Microtia and Atresia and is the youngest of three siblings. Derek loves music and all things computer related since he is working toward a college degree in computer engineering and graphic design. Derek’s parents never treated him any differently from his other two siblings (brother Devin Dwyer and older sister, Kelley Dwyer). However, Derek’s mom, Lynda Dwyer, has been concerned about his hearing loss over the years and was worried about Derek being social with friends and being able to hear well enough in school and in college.  While he has managed to get by, Derek does struggle with interpersonal communication and his family had hoped that his social circle would expand with his entrance to college. However, this has not yet happened for Derek and his family believes it may be partially due to the lack of confidence with his own voice, and his ability to participate in conversations and hear well in all situations. Derek’s sister, Kelley, says “Derek has been my biggest inspiration in life…he defies the expectations of a special needs person and knows no boundaries to his capabilities.” Derek lives in an apartment with his brother, Devin, and his roommates carrying on just like any college student would.

In May of this year (2014), Kelley graduated with her doctorate in Audiology and is currently a pediatric audiologist at Pediatric ENT of Atlanta in Georgia. Dr. Kelley Dwyer has waited her whole life to help her brother hear better and now that she is his audiologist for life, she finally gets the chance to do so. Dr. Dwyer has watched her brother struggle over the years and when growing up, her family didn’t always have the money to purchase hearing devices for him. Dr. Dwyer wants Derek to just feel comfortable everyday when being a part of social conversations. Dr. Dwyer says, “Derek never asks for anything, so I am going to ask for him.” She wanted him to adjust better to college when going back this fall. She says, “As a college student, I do not want him to struggle to hear the lecture content, when the content itself may be very difficult.”

Derek Dwyer and his family: (from the left: Dr. Kelley Dwyer (Derek’s sister), Derek Dwyer, Devin Dwyer (Derek’s big brother), and Lynda Dwyer (Derek’s Mom), at his fitting for his new Oticon Medical Ponto Plus system.

Dr. Kelley Dwyer found Ear Community (a 501c3 nonprofit organization) and decided to apply on behalf of Derek. On September 19^th, 2014, Dr. Dwyer fitted her brother with two new Oticon Medical Ponto Plus processors w/streamer.  This was an exciting day for not only Derek, but for his family too! Joining Derek in his fitting were his older brother Devin, and their mom, Lynda. Derek’s sister, Kelley, was proud to fit him with his new Oticon Medical processors and streamer knowing that this will change his life forever and help him excel in college and in life. “My family really appreciates all that Ear Community has done and specifically the work the organization does for individuals born with Microtia and Atresia and for the hearing loss community,” says Dr. Dwyer. Dr. Dwyer stated that, “Derek LOVES the processors and the streamer! We will likely get him the remote mic for Christmas that he can use during his college lectures. I really feel that this will make a big difference in his social and school capabilities.” “Ear Community is happy to have been able to help Derek hear better,” says Melissa Tumblin, Founder of Ear Community. “No adult or child should ever have to struggle with learning in school, says Melissa. “It’s important for Ear Community to help individuals like Derek. We have so many bright individuals in our world and to find out when someone is struggling with their hearing is very disappointing. Individuals like Derek can be so much more if they are only given the opportunity to hear better with a hearing device…it can be life changing.” says Melissa Tumblin.

Thank you Dr. Dwyer, for not only applying to Ear Community for Derek to obtain a hearing device, but also for donating your time and services to program his new processors.  Ear Community wishes to also say a very special thank you to Alan Raffauf, Vice President of Marketing of Oticon Medical, for donating these hearing devices to Ear Community so that the foundation could help Derek. Thank you Alan, for helping Dr. Dwyer follow her dream as an audiologist by helping her brother hear better with Oticon Medical processors. Thank you for your support and for helping Ear Community continue with its mission of helping the Microtia and Atresia community. While the Ear Community organization is proud to have donated Derek’s new Oticon Medical Ponto Plus System, none of this would have been possible without Oticon Medical donating this amazing hearing device to Ear Community to begin with. 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.”

Derek, all of us here at Ear Community are so proud of you and we know that you will become an amazing technical professional when you earn your college degree. For now, enjoy your new ears and enjoy college. Congrats on hearing better and in building your self confidence.

Thank you,
Melissa Tumblin
Founder of Ear Community
and
Ear Community Board Members
www.EarCommunity.org

Ava Katuszonek, 3 years old, RMA, West Virginia, USA, wearing her new Oticon Medical Ponto Plus processor.

Meet Ava Katuszonek, an adorable little three year old girl who was born with Microtia and Atresia of her right ear. Ava is a very happy little girl who enjoys playing with friends and is excited to learn the alphabet and begin reading. However, when Ava was about one year old, her mom, Shannon, began noticing her struggling with her hearing. Ava wasn’t always responding to Shannon’s voice when she would call for her. Two years ago, Ava and her parents, Paul and Shannon, attended an Ear Community Microtia and Atresia picnic in Pleasanton, California where they were given the opportunity to learn more about bone conduction hearing devices. Ava’s parents tried to obtain a BAHA for little Ava as soon as they could, but their insurance plan under Kaiser Permanente denied their coverage for a BAHA. Ava’s mother, Shannon, also did not realize there were many options available on the market for BAHAs. Now knowing this information, Ava’s parents continued appealing with their insurance provider in order to help Ava hear better with a BAHA.

Shortly after attending our Ear Community picnic in California (two years ago), Ava lost her father in a car accident. As you can imagine, this tragic loss devastated Ava and her entire family. “I remember receiving a call from Ava’s mother, Shannon, asking me if I had a picture that I had taken of the three of them at the picnic and if she could have a copy because she wanted to keep some recent memories of Paul,” said Melissa Tumblin, Founder of Ear Community. Although Shannon and Ava were able to receive temporary insurance coverage, the insurance coverage they had through this provider also did not provide coverage for a BAHA. “It has been very frustrating and challenging trying to obtain a BAHA for Ava,” says Shannon. Recently, Shannon and Ava moved to West Virginia and were able to find insurance coverage for their family again, but still no coverage for a BAHA for little Ava.

Shannon decided to apply to the Ear Community Organization for help obtaining a BAHA for Ava. On September 20, 2014, Ava was fitted with her new Oticon Medical Ponto Plus system. Shannon says, Ava just loves it and thinks it is so exciting and something special. Thank you to Dr. Regina Talbert in Bluefield, Virginia for helping program and fit Ava with her new processor. Thank you also to Lindzee Nunez Weeks of Oticon Medical for helping make sure Dr. Talbert had everything she needed for little Ava’s fitting!

“Sometimes I like to think someone is looking out for us, says Melissa Tumblin of Ear Community… and maybe that someone in Ava’s case was her father, Paul.” The Ear Community Organization is so very happy to have been able to help little Ava obtain a new Oticon Medical Ponto Plus system so she can hear everything clearly, everyday of her life. “Shannon has become an amazing friend of mine since meeting her, Paul, and Ava just two years ago. Shannon’s family not only enjoys giving back to the community when they can, but over the past couple of years, Shannon and her family have shown their support to Ear Community by choosing to donate to our organization. Just this past June, Shannon also hosted our Ear Community Pleasanton, CA picnic.” says Melissa Tumblin. Shannon says “It was an absolute honor to host the 2014 Ear Community picnic and something that I have wanted to do to help give back to the community and to an organization that has helped me and my family directly.”

Ear Community wishes to say a very special thank you to Alan Raffauf, Vice President of Marketing of Oticon Medical, for donating this hearing device to Ear Community so that the foundation could help Ava. Thank you for your support and for helping Ear Community continue with its mission of helping the Microtia and Atresia community. While the Ear Community organization is proud to have donated Ava’s new Oticon Medical Ponto Plus System and soft band head band, none of this would have been possible without Oticon Medical donating this amazing hearing device to Ear Community to begin with. 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.”

We are all so happy for you Ava! Hoping you have the brightest future from this day forward!

Thank you!
Melissa Tumblin
Founder and Executive Director of Ear Community
and
Ear Community Board of Director Members

Dustin Neerhof proudly wearing his new Cochlear Americas Baha 4 processor, LMA, Goldenhar Syndrome

Meet Dustin Neerhof, a sweet little nine month old baby boy who was born with Microtia and Atresia of his left ear and hemifacial microsomia (diagnosed as having Goldenhar Syndrome). Dustin is a happy little boy who enjoys cooing and babbling with his identical twin brother and the two are quite the cute duo! Dustin just loves being cuddled by his parents and enjoys learning something new each day, but Dustin is having trouble hearing his parents voices because of being born with Atresia.

Dustin’s mom, Jaalah, says “the name Dustin means Valiant Fighter and Dustin has lived up to his name. He has had a very difficult start to his life being in and out of hospitals and emergency rooms having undergone five surgeries to date.” At first, Dustin was struggling with severe reflux and aspiration and had his first surgery when he was under two months of age for anti-reflux surgery Fundoplication and Gastrostomy Tube surgery. Dustin has been dependent on his feeding tube for his nutrition since this surgery. In addition to Dustin’s reflux concerns and feeding tube, he also had life threatening obstructive apnea and it was discovered that he was choking on his tongue, due to his jaw being misaligned from having hemifacial microsomia, which was interfering with his breathing. Dustin was dependent on a CPAP machine for three weeks of his life while living in the Neo-natal Intensive Care Unit. Dustin’s parents found themselves faced with a difficult decision to choose either a tracheostomy or an invasive mandibular jaw distraction to lengthen his jaw. After much thought and discussions with multiple medical professionals, Dustin’s parents chose the jaw extension surgery. The surgery was successful and little Dustin was finally released from the hospital in April of this year and has been home since.

Now, that Jaahlah can focus on Dustin’s hearing loss a bit more, she realizes that he isn’t hearing everything and is very concerned that he will be missing out on many sounds. She is worried that he will struggle with his hearing as he gets older, especially with his vocabulary soon to develop. Unfortunately, the family’s insurance plan through Humana does not have any coverage included for hearing devices or hearing tests. Jaalah has been so busy with the twins, Dustin’s well being, and medical bills, that she has not yet been able to return back to work, now relying on her husband as their only source of income. Thankfully, Jaahlah found out about Ear Community through their audiologist, Dr. Katie Zawistowski at Children’s Hospital Colorado, and Cochlear representative, Wendy Fuller. Ear Community’s Founder, Melissa Tumblin says “When we received Jaalah’s hearing device application for Dustin, our board members immediately wanted to help him with a Baha 4 from Cochlear Americas! This family has been through a lot and aside from all that little Dustin has endured, it is so important that he be given the help and opportunity to hear right away.”

Dustin’s fitting: (left to right) Dr. Katie Zawistowski of Children’s Hospital Colorado, Wendy Fuller of Cochlear Americas, and Dustin with his happy mom, Jaalah Neerhof.

On September 10^th, 2014, Dustin was fitted with his new Cochlear Baha 4 sound processor with soft band head band. A special thank you to Dr. Katie Zawistowski at the Bill Daniels Center for Children’s Hearing for Children’s Hospital Colorado for programming and fitting Dustin’s new Cochlear Baha 4 processor. Thank you also to Wendy Fuller of Cochlear Americas for being with Dustin and his family on his special day when receiving his Baha 4! Together, both of you helped make this family’s day not only exciting, but you helped them by putting them at ease and by being there for them because of your commitment to help a child hear. “Thank you for doing what you do for the children and adults just like Dustin, says Melissa Tumblin…these are the happiest moments when organizations like Ear Community, Cochlear Americas, and Children’s Hospitals look forward to, appreciate, and enjoy.” Thank you for coming together to help little Dustin hear better!

Ear Community is a nonprofit organization that helps the Microtia and Atresia community worldwide. Ear Community is so very thankful for the help that it receives and when other organizations come together to help Ear Community with its mission, to help children and adults born with Microtia and Atresia. “Thank you to Cochlear Americas for helping little Dustin hear better and for donating a new Baha 4 processor to him so he can hear easier as his vocabulary begins developing,” says Melissa Tumblin.

Ear Community would especially like to thank Kerri Lewandowski and Joanne Kernie of Cochlear Americas for donating a new Baha 4 to our foundation so our foundation could help another child like Dustin hear better. “Cochlear is the global leader in implantable hearing solutions. It has a dedicated global team of more than 2,500 people who deliver the gift of sound to those with hearing loss in over 100 countries. Its vision is to connect people, young and old, to a world of sound by offering life enhancing hearing solutions. In 2013, Cochlear celebrates 100,000 Baha System users – all with unique stories of how being able to hear again has impacted their lives. The Cochlear promise of “Hear Now. And Always” embodies the company’s commitment to providing its recipients with the best possible hearing performance today and for the rest of their lives.”

Hoping this will help make your life more enjoyable and full of sounds Dustin! Enjoy your new Cochlear Baha 4! All of us here at Ear Community are so happy for you!

Thank you,
Melissa Tumblin
Founder and Executive Director of Ear Community
www.EarCommunity.org