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