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

Eliana Villanueva, 3 years old, RMA, wearing her newly donated Cochlear Americas Baha 4 processor!

Meet Eliana Villanueva, a beautiful three year old little girl who was born with Microtia and Atresia of her right ear who lives in Riverbank, California. Eliana enjoys playing with her older brother and sister (Joey and Samantha) and is proud to be a mama’s girl, says her mother, Veronica. Eliana is also a very kind and loving child who just loves playing with her younger cousins.

Two years ago, Eliana’s parents, Veronica and Santiago, found Ear Community and had attended the organization’s picnic for Microtia and Atresia families in Pleasanton, CA. While at the Ear Community picnic, Eliana had the chance to try on a BAHA for the first time, but Eliana was too young to express what she thought about the BAHA at the time. However, Eliana’s mother says that “she knew the hearing device was working when it was on Eliana because her eyes got glossy and it looked like she wanted to cry.” Over the next couple of years as Eliana’s vocabulary developed, Santiago and Veronica decided that Eliana may now be ready for a BAHA as they could see her struggle lately with her hearing. When Santiago and Veronica heard that an Ear Community picnic was coming back to Pleasanton, CA again this summer (2014), they knew they had to take Eliana again because she was now old enough to express verbally what she would think about trying on a BAHA. When Veronica and Eliana arrived at the Ear Community picnic, they went straight to the table and stood in line to put a BAHA on. Veronica says “Eliana’s reaction was priceless! I asked her if she could hear and she said yes. Was it loud or was it perfect and Eliana said it was perfect.” This was the moment when Veroinica knew they had to try again to get Eliana a soft band BAHA. When Eliana got home, she told her father, Santiago, all about the “noise maker” that she had on her head and how much she wanted one.

During the past year, Eliana’s parents had inquired about the Cochlear Baha 4 through their audiologist. Unfortunately, the family was denied insurance coverage for the device and the cost of a Baha was beyond what the family could afford. They were encouraged to apply again through the appeals process and were still denied by Kaiser. Veronica decided to apply to Ear Community for help on behalf of little Eliana. On August, 28^th, Eliana was fitted with a new Cochlear Baha 4 processor. On the way driving to the audiology office, Veronica said that Eliana kept singing a song in the car on the way “I’m gonna get my hearing aid, I’m gonna get my hearing aid.” It was a joyous day for Eliana and her whole family!

Since Ear Community was able to help Eliana obtain a hearing device, Veronica and Santiago have become supporters to Ear Community. As part of a thank you to the Ear Community Organization, Santiago (Eliana’s father) took the ice bucket challenge, but decided to make their donation to Ear Community, for children and adults born with Microtia and Atresia. Ear Community Founder and Executive Director, Melissa Tumblin, thanks the Villanueva family for giving back to the Microtia and Atresia community through Ear Community. “We are so very happy that we could help little Eliana hear better and that you were able to learn about a BAHA through our family events,” says Melissa.  Here is the link to the video of Eliana singing in the car about getting her Baha 4!  https://www.facebook.com/video.php?v=4780912217443&set=vb.1734811718&type=2&theater

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 Eliana hear better and for donating a new Baha 4 processor to her so she can thrive in school,” says Melissa Tumblin.

A special thank you to Dr. Jennifer Hayes and Dr. Marilyn Dixon-Brown, both audiologists of Kaiser Permanente for volunteering their time and services to program Eliana’s new Cochlear Baha 4 processor.

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 Eliana 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.”

Here’s to hearing everything a child should hear Eliana! 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

Ivy Welsh, Ear Community financial assistance award recipient, May 17, 2014

Ear Community is proud to have been able to help Ivy Welsh get to Los Angeles, CA so she could have surgery for a newly reconstructed Medpor ear on May 17th, 2014.  This was Ivy Welsh’s second surgery after living with a previously botched reconstructed ear from over seven years ago.  This was her second chance to receive a successful reconstructed ear.  We are so happy that Ear Community was able to help you Ivy!  Good luck with everything and keep us posted on your new ear so we can see how things are going!

So happy for you,
Ear Community
www.EarCommunity.org

Milargro Alfaro, RMA, Cochlear Baha 4 recipient on March 5th, 2014

Meet little Milagro Alfaro who was born with Microtia and Atresia of her right ear. Milagro is four years old and also has Goldenhar Syndrome along with additional medical issues. Even though Milagro has better hearing in her left ear, she has struggled with chronic middle ear fluid that has impacted that ear’s access to sound, affecting annunciation and pronouncing vocabulary/language. Milagro’s family quickly realized she was struggling with her hearing when they tried teaching her Spanish. They noticed that she had difficulty learning Spanish and that she needed to be “taught” vocabulary and how to use language since it did not come naturally for her. In fact, Milagro has had little success learning English despite receiving speech and language services 2 times a week from the public school system. As a result, Milagro has been moved to a much more intensive program in the Deaf/Hard of Hearing preschool in hopes of meeting her needs better.

Recently, Milagro was given the opportunity to trial a Baha on a soft band to see if it would help her hear better. During this trial, Milagro’s family was amazed at how much she improved with her communication and desire to interact with others. She became more alert and excited to be around others. Unfortunately, Maryland Medical Assistance did not offer coverage for a Baha for little Milagro under the age of five, which are the years of critical development for speech and language skills. Milagro’s audiologists and family were very concerned that she was missing crucial time in her window of learning without having a Baha, especially after witnessing her struggle over the years already. Dr. Robyn Miller and Joan LaCoss researched helpful resources that could help little Milagro and found Ear Community. Little Malagro received a new Cochlear Baha 4 through Ear Community and was fitted on March 5^th, 2014. Today, Milagro is already showing improvement and speaking more and she is looking forward to returning to school this fall to learn and experience what she has been missing out on now that she can hear better.

Ear Community is a nonprofit organization that helps the Microtia and Atresia community. 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. “It is always something special to witness a child be given the gift of hearing,” says Melissa Tumblin, Founder of Ear Community. “Without the technology behind hearing devices and the support from hearing device companies like Cochlear Americas, children like Milagro would never be given the chance to hear better and experience life the way it was meant to be intended. Thank you to Cochlear Americas for helping little Milagro hear better and for donating a new Baha 4 processor to her so she can thrive in school,” says Melissa Tumblin.

A special thank you to Dr. Robyn Miller (educational audiologist) of Montgomery County Public Schools for helping Milagro’s family apply for a hearing device for her. Also, a very special thank you to Joan LaCoss of Children’s National Medical Center, who is Milagro’s clinical audiologist, for volunteering her time and services to program Milagro’s new Cochlear Baha 4 processor.

Ear Community would especially like to thank Kerri Lewandowski and Joanne Kernie of Cochlear Americas for donating a new Baha 4 to our foundation (which is a newer model processor that just recently launched a couple of months ago) so our foundation was able to help another child with hearing loss like Milagro. “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, thank you to everyone who was involved with helping Milagro hear better and helping her to thrive with her speech and language skills from here on out!

Melissa Tumblin
Founder of Ear Community
and
Ear Community Board Members

www.EarCommunity.org

Oticon Medical has entered into a partnership with Bo Håkansson, PhD, Professor at Chalmers University of Technology, Gothenburg, Sweden, for the future commercialization of the active transcutaneous Bone Conduction Implant (BCI). Prof. Håkansson is the inventor of the first bone anchored hearing aid and is one of the pioneers in direct bone conduction hearing systems with more than 30 years of experience. In recent years, Prof. Håkansson has focused his work in the area of active transcutaneous solutions. The Oticon Medical team will collaborate with Prof. Håkansson to combine his groundbreaking research and optimization of an active transcutaneous solution with the innovative audiology, signal processing and wireless capabilities of the Oticon Medical Ponto System.

Additional information about the partnership and technology can be viewed at the following video link:
https://www.youtube.com/watch?v=oSJ1PxdGvBQ

 Extending our commitment to direct bone conduction

The new project is a natural extension of the Oticon Medical commitment to direct bone conduction systems that improve patient outcomes. The BCI concept transfers sound signals to the implanted transducer through a wireless link. The concept provides bone conduction via direct drive, similar to the way the Ponto System does today. The placement of the BCI vibrator in direct contact with the mastoid bone ensures that patients no longer have to accept the inherent disadvantages of current passive transcutaneous solutions that function via skin drive, including degradation of sound quality, limited output power, potential skin issues, and a cosmetically unfavorable and bulky external part when wearing the sound processor.

“Oticon Medical is committed to remaining at the forefront of advances in patient-centered solutions that provide quality of life benefits and extend the potential for treatment and successful outcomes,” says Oticon Medical President Jes Olsen. “We will build on Prof. Håkansson’s leading-edge work with the proven strengths of our Ponto System including the powerful and efficient Inium signal processing platform and wireless capabilities. We believe that only direct bone conduction drive, such as that provided by the BCI and our Ponto System, can deliver the desired performance in sound that patients and professionals demand.”

Using the BEST transducer

The new project will use the proprietary BEST transducer (Balanced Electromagnetic Separation Transducer) that is less than half the size of transducers found in comparable products. The BEST transducer provides the highest efficiency and smallest volume, making surgery straightforward and the anatomical coverage high.

“I look very much forward to the cooperation with Oticon Medical and the teams in Gothenburg, Copenhagen and Nice that were instrumental in bringing the Ponto System to market. Their commitment to develop solutions for better patient outcomes and Oticon Medical’s global distribution structure and financial strength will certainly fuel the future industrialization and commercialization of this BCI project,” observes Prof. Håkansson.

Two complementary solutions

In the future, there will be a need for both the current percutaneous Ponto System and the active transcutaneous BCI project to ensure high fidelity sound quality to all types of patients with conductive and mixed hearing losses as well as single-sided deafness. “The two complementary solutions in the future Oticon Medical portfolio will give professionals and patients an option to choose the most optimal solution for the individual patient – based on type of hearing loss, age, reversibility wishes and cosmetics” says Jes Olsen.

The commercialization of the BCI project with new technologies is long term. The Ponto System is currently the most powerful solution on the market that through direct bone conduction drive and advanced signal processing and wireless technologies provides the best patient outcomes. “We are proud to see that clinical data shows that 2 out of 3 patients prefer Ponto sound processors* when given the choice,” adds Olsen. “We believe that through our collaboration with Prof. Håkansson, we can continue to expand our ability to deliver benefits that optimize lifelong patient outcomes – both now and in the future.”

*Reference List

1. Olsen, S. et al. (2011). Comparison of two bone anchored hearing instruments: BP100 and Ponto Pro. International Journal of Audiology, 50, 920-928.
2. Bosman, A. et al. (2013). Evaluation of a new powerful bone-anchored hearing system: a comparison study. Journal of the American Academy of Audiology, 24 (6), 505-13.
3. Oeding, K. & Valente, M. (2013). The effectiveness of the directional microphone in the Oticon Medical Ponto Pro. Journal of the American Academy of Audiology, 24 (8), 701-13.
4. Hill-Feltham, P. et al. (2014). Digital processing technology for bone anchored hearing aids: a randomised comparison of two devices in hearing aid users with a mixed or conductive hearing loss. Journal of Laryngology & Otology, 14, 1-9.
5. Busch, S. et al. Audiological results and patient satisfaction with Baha BP 110 and Ponto Pro Power: Results of a prospective clinical study. Presentation at 4th International Symposium Bone Conduction Hearing – Craniofacial Osseointegration, Newcastle upon Tyne, UK, June 2013.
6. Soli et al. Within-subject comparison of speech perception in quiet and in noise for patients with single-sided deafness fitted with the BP100 and Ponto osseointegrated implant speech processors. Presentation at 12th International Conference on Cochlear Implants and Other Implantable Auditory Technologies, Baltimore, USA, May, 2012.
7. Bosman, A. et al. Evaluation of Cochlear BP-100 and Oticon Ponto Pro sound processors. Poster at 3rd International Bone Conduction hearing – Craniofacial Osseointegration (Osseo) Conference, Sarasota, USA, March 2011.
8. Ortega, C. et al. Performance of the Ponto Pro and BP 100 processors in patients with single sided deafness (SSD). Presentation at 3rd International Bone Conduction hearing – Craniofacial Osseointegration (Osseo) Conference, Sarasota, USA, March 2011.
9. Stenfelt, S. Comparing of two digital bone-conduction hearing aids in experienced users: a two-center study. Presentation at 3rd International Bone Conduction hearing – Craniofacial Osseointegration (Osseo) Conference, Sarasota, USA, March 2011.
10. Olsen, S. et al. Field test of a new bone anchored system. Poster at 22nd Annual Convention of the American Academy of Audiology (AAA) – Audiology Now, San Diego, USA, April 2010.

Brent and Melissa’s daughter, Alyssa Tumblin

In 2009, a beautiful baby girl was born to Brent and Melissa Tumblin named Alyssa.  This beautiful little girl was born missing her right ear (Microtia) and missing her ear canal (Atresia), resulting in hearing loss.   Brent and Melissa tried to find answers through many doctors and ENTs and tried to learn why Ally was born with Microtia and Atresia, “it was very difficult finding any kind of answers to our questions” said Melissa.   When Ally was about nine months old and after some months of doing their own research to see what they could find, Melissa decided to start a support group on Facebook to help connect families and individuals in the same situation.  This support group has been running since May 20th, 2010 and has since then become the world’s largest global support group for families with loved ones born with Microtia and Atresia.  The Facebook support group is called “The Microtia and Atresia Support Group.”

Ear Community featured on the front page of the Boulder Daily Camera and Broomfield Enterprise papers (Melissa with her daughter’s Ally and Hailey)

Melissa quickly discovered that the majority of families who have a child born with Microtia and Atresia all have the same questions and could not find the answers they were looking for.  After considering forming a nonprofit organization for two years, Melissa decided to found the Ear Community Foundation on February 1st, 2012.  Ear Community has an amazing website that contains anything and everything that anyone would ever need to know about Microtia and Atresia, including surgical options, hearing devices,  helpful accessories, helpful resources for speech services and IEP/504 plans for school, life stories, and a forum for connecting families and individuals in the same situation.  Ear Community is a globally recognized nonprofit organization and has been referred to as a portal of information for medical professionals for updating themselves regarding Microtia and Atresia. Melissa has even presented CE/CEU accredited webinars that audiologists, ENTs, and therapists can take for medical credit and learn more about the struggles families often endure, all options,  and what information is needed when someone has a child born with Microtia and Atresia.  Ear Community also gives back to the community through hearing device donations, college scholarships, and financial assistance for travel costs for surgery planning (when funds are available).  In fact, Ear Community donated 31 hearing devices in just 2013 alone to children and adults born with Microtia and Atresia around the world! https://earcommunity.org/events/great-memories/

2013 Chicago, Illinois Ear Community Microtia Picnic (230 attendees)

One of Melissa’s main goals for Ear Community was to create a community for anyone born with Microtia and Atresia, including their families, to go to, a place where they would never feel alone.  Since hosting her first Microtia and Atresia summer family picnic in 2011 in Denver, Colorado, Melissa has gone on to hosting 14 more picnics in 2012 and 2013 in Canada, Spain, the United Kingdom, and the United States bringing together close to 2,500 people.  This summer in 2014, Ear Community will be hosting another seven picnics across the United States, expecting another 1,300 to 1,500 people coming together.  Ear Community picnics provide a wonderful opportunity for families to come together and share experiences and also learn about all options and get answers to their questions by mingling with world renown plastic surgeons, ENTs, anaplastologists, audiologists, and therapists who attend our events.  Hearing device companies and surgical device companies proudly sponsor our events and come together to help the families who attend our picnics get the answers they are looking for.  Some of the wonderful sponsors who support Ear Community’s mission are:  Cochlear Americas, Ear Gear, Oticon Medical, Phonak, Sophono, and Stryker CMF.  We look forward to seeing you at one of our picnics this summer in CA, CO, CT, GA, MD, MI, and TX!

Melissa Tumblin speaking with families about all options at the 2013 Cincinnati, Ohio Ear Community picnic.

While Ear Community is a highly successful nonprofit organization, we are still very small and have very little funding.  When considering donating to a 501c3 nonprofit organization, please consider making a donation to Ear Community.  We could use your support to get to the next level and continue helping loved ones with Microtia and Atreisa across the world even more!
https://earcommunity.org/donate/

Every child is perfect with Microtia and Atresia, but if your child or if you are an adult who has M/A and you would like to know what options are currently available today, you have the right to know what these options are.  Especially, if you believe some of these options may make you happier in life.  Please know your options so you can be the best advocate for your child or for yourself.

Thank you from the bottom of our hearts!
Melissa Tumblin and Family and Board of Directors
Founder and Executive Director of Ear Community
www.EarCommunity.org

Hi Everyone!

2013 Chicago, Illinois Ear Community Microtia Picnic

Ear Community is proud to host seven more Microtia and Atresia family picnics this summer.  Last year, Ear Community hosted seven picnics that took place in Spain, the United Kingdom, and in the United States, helping bring almost 1,300 people together along with medical professionals and hearing device companies.  Ear Community’s picnics welcome Microtia and Atresia families including individuals born with Hemifacial Microsomia, Goldenhar Syndrome, and Treacher Collins.  When families come together at Ear Community picnics, they are given the opportunity to share experiences with each other, enjoy a Fun and FREE day, and learn about all of the options that are currently available.  Medical professionals also attend our Ear Community picnics helping families find the answers they are looking for.  The medical professionals who attend our picnics include some of the world’s best Microtia and Atresia plastic surgeon experts, ENTs, audiologists, therapists, and anaplastologists.  Our picnics are generously sponsored by many of the hearing device companies that market bone conduction hearing devices.  The hearing device organizations who participate in our events help families learn more about hearing loss and give families and individuals the chance to try on the latest hearing devices that are currently available.   Ear Community is always thankful for the help and funding that it receives, but most of all…we are thankful for the families and individuals who come together to attend our events making each picnic a memorable one and a rewarding experience.  Thank you to everyone for being a part of our amazing Ear Community Foundation (a 501c3 nonprofit organization) and helping give back to the Microtia and Atresia community.

This year’s Microtia and Atresia Summer Family Picnics will take place in:
Pleasanton, California – Saturday, June 21st, 2014
Detroit, Michigan – Saturday, June 28th, 2014
Ansonia, Connecticut – Saturday, June 28th, 2014
Broomfield, Colorado – Saturday, July 19th, 2014
Frederick, Maryland – Saturday, July 26th, 204
Atlanta, Georgia – Saturday, August 2nd, 2014
San Antonio, Texas – Saturday, August 16th, 2014

This year, one of Ear Community’s picnics will be in collaboration with a Microtia surgeon conference.
On Saturday, July 19th, Ear Community will host its 4th Annual Colorado Picnic in Broomfield.  Our picnic will be in collaboration with the Let Them Hear Foundation’s conference.  If you would like to attend these events (one or the other), you must register separately for each.  To register for our Colorado picnic, please send an e-mail to ColoradoMicrotia@Hotmail.com to receive an Evite with details and to RSVP.  If you would like to register for the Let Them Hear Foundation’s conference, you can do so by clicking on the following link:  http://www.atresiarepair.com/wp/wp-content/uploads/2013/11/0-2014_LTHF_AM_Conf2.pdf  While the Microita conference will take place in Westminster, CO, our picnic is just down the road (5 minutes away) in beautiful Broomfield, CO.  Please join us and enjoy an amazing day together!

Ear Community’s picnics are sponsored by the following organizations this year:

I look forward to seeing everyone come together again at our Ear Community picnics this summer!  For a list of our picnic dates and details on how to contact a picnic host to RSVP to a picnic, please visit the following link: https://earcommunity.org/2014-picnics-and-events/  Thank you so very much to all of our amazing sponsors and attendees who come to our picnics making them so special!
Thanks.

Melissa Tumblin
Founder and Executive Director of Ear Community
Founder of the Microtia and Atresia Support Group on Facebook

Thank you to Dr. Matthew Carfrae of the University of Virginia for letting us know about Dr. Jahrsdoerfer’s passing.

Dr. Robert Jahrsdoerfer, the pioneer of the canalplasty technique

On Monday, Dr. Robert Jahrsdoerfer passed away. Dr. Jarsdoerfer was the one ENT/Otologist who developed the canalplasty technique. Many ENTs trained with Dr. Jahrsdoerfer, learning his skills to help restore hearing loss. Some ENT Otologists who learned from Dr. Jahrsdoerfer include Dr. Joseph Roberson, Dr. Brad Kesser, Dr. Matthew Carfrae, and many others. The J scale is named after Dr. Jahrsdoerfer (the scale that Otologists use to determine if a child or adult is a candidate for canalplasty). I am certain this is a very sad week and such a sad loss for so many friends and families and the colleagues in the hearing loss industry who knew him personally and knew of his amazing work. Thank you Dr. Jahrsdoerfer for your skill, talent, and passion for wanting to help so many hear in life. You will forever be amazing and a legend at that. Thank you for touching so many lives. May your work live on forever. You will be missed.
– Melissa Tumblin, Founder of Ear Community and the Microtia and Atresia Support Group on Facebook
_____________________________________________

Dr. Robert Albert Jahrsdoerfer Dr. Robert Albert Jahrsdoerfer, “Dr. J,” 83, of Afton, passed away on Monday, March 17, 2014, at his residence. He was born on June 10, 1930, to the late Remig and Lucy Jahrsdoerfer. Robert is survived by his loving wife of 37 years, Carol A. Jahrsdoerfer; four daughters, Alexa Jahrsdoerfer of Fredericksburg, Virginia, Sonja Jahrsdoerfer of Randlett, Utah, Alison Jahrsdoerfer and her husband, Martin, of Cupertino, California, and Laura Fisher of Cos Cob, Connecticut; two sons, Bob Jahrsdoerfer of Crozet, Virginia, and Michael Fisher of Staunton, Virginia; son-in-law, Rodney Pace of Fluvanna County; grandchildren, Jessica Jahrsdoerfer of Kaneohe, Hawaii, Jacob Pace of Fluvanna County, and Nicholas Garrett Davis of Cos Cob, Connecticut; many nieces and nephews; and a host of dear friends around the world. Robert was a world-renowned Otologist. He gave the gift of hearing to thousands. Robert was a Professor Emeritus of the University of Texas Health Science Center, Houston and the University of Virginia. He loved his dogs, work, wife, and children. Robert was an avid athlete and sports fan, Wahoo-Wah!! A funeral service will be held Thursday, March 20, 2014, at 5 p.m. at Teague Funeral Chapel. Family will receive friends Wednesday, March 19, 2014, from 6 until 8 p.m. at Teague Funeral Home. Donations may be made in Dr. J’s honor to Hospice of the Piedmont. Friends may sign the guestbook at teaguefuneralhome.com.

Rest in peace Dr. Jahrsdoerfer,
Melissa Tumblin
Founder of Ear Community
http://www.dailyprogress.com/obituaries/jahrsdoerfer-robert/article_e1475ae2-c260-5bb5-bf7e-ba447c25926e.html?mode

Liza Orlovskaya, BMA, Moscow, Russia

Meet Liza Orlovskaya, a beautiful and talented young lady who is 12 years old living in Moscow, Russia. Liza was born with bilateral Microtia and Atresia. Liza not only is a high achiever and enjoys going to school, but she competes in literary competitions and wins them. She also reads a lot and looks forward to spending time with her friends. However, it was becoming more and more difficult for Liza to communicate whenever she goes out in public, especially without having a hearing device to wear. Sadly, Liza’s mother, Aleksandra, explains that “Russian government has not yet created any programs or medical insurance to help children with Microtia and hearing loss.” “There just is not enough information about Microtia and Atresia here, in Russia.” It was also becoming more of a challenge for Liza to hear in the classroom as front row seating is not always helping her to hear better when the teachers walk about the classroom when speaking.

When Liza was born, Aleksandra, explains that “everyone in the hospital told me that I should leave her.” It was assumed that Liza would probably never talk and would most-likely have challenges with her communication. Of course, Aleksandra did not listen to what was said to her in the hospital. Aleksandra worked very hard in helping provide speech therapy to Liza throughout her life while growing up. In fact, over the years, some of Liza’s doctors had crushed their hopes and feelings as “some doctors do not ask about anything else and think that Liza does not have the ability to speak at all after seeing her little ears, says Aleksandra.” Some of Liza’s doctors in the past “have asked if she is able to go to the bathroom by herself” (humiliating Liza when she is practically a teenager) and some have stated that “she should not study in a (normal) school.” It was even suggested by one of the family’s doctors to “stop making any effort to help Liza because in his words “it was meaningless.” This same doctor even suggested that Aleksandra should consider making another healthy baby. Because of these experiences, Liza has been refusing to visit any doctors at all. The saddest recommendation for the family was to be told to institutionalize Liza in a school where she would be away from her parents. Since this kind of institution would have no speech at all and only communicate by sign language, “it is said that after having spent just one year there, Liza would lose her ability to speak normally, explains Aleksandra.”

Liza Orlovskaya and her mother, Aleksandra.

In hopes of trying to find help for Liza, Aleksandra discovered the Microtia and Atresia Support Group on Facebook a little over one year ago and learned about the Ear Community Foundation, both founded by Melissa Tumblin, who has a daughter born with Microtia and Atresia. On March 4^th, 2014, Liza was fitted with two brand new Oticon Medical Ponto Plus bone conduction hearing devices with streamer. The hearing device system was donated by Oticon Medical and awarded through the Ear Community Foundation. In a message to Melissa Tumblin, Aleksandra tells Melissa that “Liza sings all day long to the music through the Ponto Plus Streamer…the devices are amazing and we have shared lots of tears of joy over this experience!”

Liza with her audiologist, Dr. Anton Parshin, during her fitting for the Oticon Medical Ponto Plus System

In order to help provide a second chance at a life of hearing for Liza, many individuals were involved in order to make this all possible. Thank you to Liza’s doctor, Dr. Nersesyan Marina, for referring her to an audiologist and recognizing that Liza could thrive in school if she were to be given the chance to wear a hearing device. A very special thank you to Dr. Anton Parshin who is Liza’s audiologist. Dr. Parshin donated his time and services to program Liza’s new processors and he helped educate her on how to use her new Ponto Plus system. A very special thank you to Alan Raffauf of Oticon Medical for donating these hearing devices to Ear Community so that the foundation could help Liza. Thank you to Sergey Petrov, who donated his time as a photographer, to help capture these amazing memories for Liza and Aleksandra and their family. Thank you also to one of Ear Community’s board of director members, Angela Sabal, for helping coach Aleksandra about how Ear Community could help Liza obtain a hearing device. And…thank you especially to Aleksandra who is an amazing mother who would not give up on her daughter and who continued to advocate for her even when being discouraged by several medical professionals. Only a mother’s love has made Liza the amazing and inspirational young woman she already is today.

While the Ear Community organization is proud to have donated Liza’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.”

“Not only has this experience been a positive one for Liza and her family, but it has instilled new hope once again in Liza regarding seeking help from medical professionals,” says Melissa Tumblin, Founder and Executive Director of Ear Community. “Liza’s story also shows us how important it is to give back and how rewarding it can be to help others around the world when in need,” says Melissa. “It is the stories like Liza’s that continue to keep my passion going for helping children and adutls born with Microtia and Atresia have a better a quality of life.” I hope you enjoy viewing some of Liza’s happy moments during her experience with her new Ponto Plus System, captured by Sergey Petrov.

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