Brian Campos Valladares, recipient of 2 Oticon Medical Pontos, September 17th, 2019, Virginia

Often times Ear Community works with various early intervention services, and other professionals who support children with Microtia and Atresia. This past Summer, a school nurse, Danielle Vukadinovich, reached out to us in an effort to help one of the students at the school she works at. Brian Campos Valladares, a 9-year-old boy with Bilateral Microtia and Aural Atresia. Brian and his mother recently relocated to the United States from El Salvador where they had to leave Brian’s father behind.

When we first heard about Brian’s situation, our hearts poured out to him. Here was a little boy, in a strange new country, where everyone spoke a different language that he couldn’t even hear. Growing up in El Salvador, Brian was exposed to Spanish from his parents, but being as he has Bilateral Microtia and Atresia – resulting in moderate to severe hearing loss, he could barely hear what his parents tried to say to him. Brian and his mother, Yancy, have been fighting every day to create a better life for themselves and part of that was Brian getting a good education.

Danielle helped Brian get a hearing test done, and the school was able to help him get a loaner Baha to use temporarily for school so he could learn English quicker as well as have more access to sound. He is attending a new school this year in Virginia that is specifically for the Deaf and Hard of Hearing, which will be so great for him to be around other kids like him and where teachers have a deeper knowledge base of hearing loss and how to work around it.

When Brian’s application first came to Ear Community, our board voted a unanimous ‘YES’ to help him with 2 Oticon Ponto’s so he could have full access to sound! We have an incredible Board of Directors who have such a passion for helping children gain equal access through sound. Brian’s journey wouldn’t be complete without us thanking several key individuals. First of all, of course is Brian’s mother Yancy – who has worked tirelessly to provide a better life for her son. Danielle Vukadinovich, a school nurse who went above and beyond to help a student assimilate into his new country and school. Leslie Viladegut, Brian’s case manager who helped to facilitate the details of his fitting. Thank you to Yenny who worked closely with Brian’s case at the audiology office. Also, a very special thank you to Dr. Mary Finkbone who donated her time to program and fit Brian’s devices.

On September 17, 2019, Brian was finally fitted with his “new ears” and he was thrilled!  Oticon Medical even sent a stuffed animal “Massie” monkey that has a Ponto and he named his “Brando”.

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the two new Oticon Medical Ponto 3 Superpower hearing devices to Ear Community so that they could be donated to Brian to help him hear better. Thank you to Beverly Ostrowski, Director of Customer Service, with Oticon Medical for helping ship Brian’s hearing devices. 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.”

Lastly, to Brian – thank you for allowing us to be a part of your journey, may you hold your head up high and savor each moment that life gives you. We cannot wait to watch how you soar now that you have full surround-sound and can thrive at school, home, and making new friends!

Melissa Tumblin and Rachel Songy of the Ear Community Organization, Washington, DC 9.2019

September 19th and 20th, 2019 – On September 19th, Founder and Executive Director of the Ear Community Organization, Melissa Tumblin, met with Congressmen Mike Thompson (D-CA) and David McKinley (R-WV), both of the Congressional Hearing Health Caucus, and Congressman Joe Neguse (D-CO), from Melissa’s home state, to advocate for hearing device insurance coverage for bone conduction hearing devices. After flying into DC from Colorado, the following day Melissa Tumblin was notified that the meeting that had been scheduled with Congressman Mike Thompson, for both her and Ear Community Board Member, Rachel Songy, had been cancelled. Our meeting with Congressman Thompson had been suggested by Congressmen David McKinley’s office after Rachel Songy had met with McKinley in July. Once finding out that Congressman Thompson was unavailable for the rest of the week, Melissa figured she would make the most of her day since this was the whole purpose of her trip to DC. Feeling hopeful, Melissa took a chance and headed to each Congressman’s office in hopes of still being able to meet with someone. To her surprise, she was able to meet with all three Congressmen unannounced, given the opportunity to discuss why hearing device insurance coverage is an issue for bone anchored hearing devices for both children and adults. Each Congressman took the time to meet with her, listening to her concerns. She explained the problem regarding lack of insurance coverage by private insurers for these hearing devices and explained how some children are born without ears, have no ear canals and that these are the only hearing devices they can benefit from. Congressman Mike Thompson and Senior Legislative Assistant, Crozer Connor, took the time to meet with Melissa at the last minute before heading to the floor for a bill after finding out she had flown in from Colorado to meet with him and their meeting had been cancelled that day. Melissa discussed the challenges with private insurers and the lack of coverage for these devices with them, asking for help on a national level. When meeting with Congressman David McKinley, Melissa’s story of all of the children and adults who continue to be denied by their insurance providers resonated with him as he is the only member of Congress who wears a cochlear implant and his grandson wears a bone conduction hearing device, the same hearing device her daughter, Ally, wears. Congressman McKinley invited his insurance specialist in to briefly listen to some of the stories of insurance denials that Melissa shared with them. When meeting with Congressman Neguse – he took the time to listen, along with two of his staff members and Legislative Assistant, Katie Wallace, who all tried on the bone conduction hearing devices Melissa had brought with her. Congressman Neguse was shocked to hear how many children and adults are denied the use of a hearing device and that these hearing devices are often not covered throughout adulthood by private insurers. His office also retrieved the letter that Melissa’s daughter had written to him during Better Hearing and Speech Month (May), where Ally asked him to help her advocate to hear better.

During the next day on September 20th, Ear Community Board Member Rachel Songy and Melissa Tumblin were able to meet with Crozer Connor (Senior Legislative Assistant to Congressman Thompson) after rescheduling the meeting from the day before. Both, Rachel and Melissa were able to speak in more detail with Crozer Connor, again asking for his help with hearing device insurance coverage on a national level. We are hopeful that our voices were heard and we will continue to advocate moving this process along in hopes for coverage of bone conduction hearing devices nation-wide.

https://www.youtube.com/watch?v=tcGqW-_zETw

On February 26th, 2019, the Ear Community Organization began advocating on Capitol Hill for hearing device insurance coverage for bone conduction hearing devices during Advocacy Day. The organization brought eight Ear Community families along, including one medical doctor, from states including Washington, Virginia, West Virginia, Washington, DC, Maryland, Tennessee and Colorado. Ear Community families advocated for hearing device coverage alongside the NIDCR (National Institute for Dental and Craniofacial Research), AADR (American Association for Dental Research) and FNIDCR (Friends of National Institute for Dental and Craniofacial Research) with Melissa Tumblin being a member of the Patient Advocacy Council for these dental and craniofacial research

Ear Community Families advocating in Washington, DC 2/26/2019

organizations. The families advocated for half a day on Capitol Hill, meeting with local Congressmen and Congresswomen. Ear Community also helped advocate for research funds with the NIH for the NIDCR and AADR. The day was an amazing experience for all and we were grateful for the opportunity provided.

Congresswoman Abigail Spanberger meeting with Mazie Herzing, Ear Community hearing device recipient

While advocating on Capitol Hill during Advocacy Day, Congresswoman Agibail Spanberger (D-VA) and Senator Tim Kaine (D-VA) were able to meet directly with two of our Ear Community Families (Shelley and Carly Herzing with their daughter, Mazie and Ear Community support group administrator, Kasi Logan (and her daughter, Ella) and Family). Congresswoman Spanberger and Senator Kaine were thankful to meet Mazie and the Herzing Family and the Logan Family. Both representatives were proud of these two families for helping advocate for children and adults who have Microtia and Atresia in the state of Virginia. Mazie Herzing is a bone conduction hearing device recipient from Ear Community and was awarded a Cochlear Americas Baha 5 when Mazie’s family insurance provider in the state of Virginia denied coverage for her hearing device.

While advocating on Capitol Hill with the NIDCR/AADR, our Ear Community children that were

Ear Community kids meet Gaten Matarazzo from Stranger Things

with us were very lucky to meet Gaten Matarazzo from the Netflix Science-Fiction drama series , “Stranger Things.” Gaten was there with his father, Gaten Sr., advocating for a cause that Gaten supports called cleidocranial dysplasia (CCD) – a condition he was born with that affects the development of bones and teeth. Melissa Tumblin and her two daughters, Hailey and Ally, were also invited to the NIH where they were given the opportunity to participate in director lead meetings by the NIDCR and AADR.

During the month of May, while continuing to advocate for hearing device insurance coverage, Ear Community’s co-founder, Ally Tumblin (co-founder of Ear Community), wrote letters to Congressman Joe Neguse (D-CO), Congressman David McKinley (R-WV), Congressman Mike Thompson (D-CA) and Senators Corey Gardner (R-CO) and Michael Bennet (D-CO) as a home work assignment in support of hearing loss, a cause that is near and dear to

Ally Tumblin of Ear Community, writing letters to House and Senate members during Better Speech and Hearing Month (May 2019)

Ally’s heart as she has severe hearing loss in her right ear. These letters were sent during the month of May in honor of Better Hearing and Speech Month with Ally asking for help with mandating hearing device insurance coverage for bone conduction hearing devices. Ally chose this homework assignment so she could help advocate for other children and adults who were born with Microtia and Aural Atresia. This home work assignment was a great way for Ally to follow up with her House and Senate representatives and staff that she had met with back in February.

Thank you and we’ll keep everyone updated as we continue to advocate for our community!
Ear Community
www.EarCommunity.org

Josh Brodie, Ear Community college scholarship recipient for Fall 2019.

Ear Community is honored to introduce you to an extraordinary young man named, Josh Brodie, our first college scholarship recipient for 2019!  Josh was born in China and adopted by his parents 16 years ago. When Josh was growing up, a surgeon suggested he look into getting prosthetic ears for his bilateral Microtia and Atresia.  Even at a young age, Josh knew that he was comfortable in his own skin, with who he was, and didn’t need artificial ears.

Josh has always had a foot in both worlds – the hearing and the deaf world.  He attended two high schools, one where he was on the National Honor Society, and the other – Kansas School for the Deaf – where he participated on the award-winning academic bowl team.  Josh excels in math and chemistry. He even developed several statistical simulation games to predict the outcome of basketball and football games using coins and spinners. Because of his passion for math and related subjects, Josh is planning to pursue a career in actuarial science, data analysis, or accounting.  Josh plans to attend Johnson County Community College to get his feet wet, and then possibly move on to a larger university such as MidAmerica Nazarene University where he can participate in their honors program and earn his major and minor degrees.

Josh truly has a passion for learning, and a knack for analytical things.  One of his favorite quotes is by Galilei Galileo: “Mathematics is the language in which God wrote the universe.”  We know that Josh is going to change the world (and maybe the universe!) with his grit and drive. Ear Community is thrilled to award Josh a $750 scholarship to attend school and further his education.  These kinds of scholarships would not be possible without the generous donations from supporters of Ear Community. We would like to thank our board member, Scott Newcomb and his brother, Brent Newcomb for facilitating a $2,000 grant through Brent’s employer, Tortoise Advisors, www.tortoiseadvisors.com.  Brent has been a long-term donor to our Ear Community Organization through the investment companies he has worked for. We are so grateful to have the opportunity to bless lives like Josh’s through the support of companies like Tortoise Advisors. Because of this grant, we will be able to help nearly 3 college students continue their higher education and move towards changing the world. We also thought it was wonderful to be able to help give back to a college recipient in Kansas (Josh) as Tortoise is also based in Kansas.

Ear Community has been a strong supporter of education since its inception.  We started off as an educational resource for families and are the largest parent-driven organization for Microtia and Atresia.  Because education is so important to us, it makes the ability to award college scholarships that much sweeter. Josh, we wish you the best of everything and know you will study hard and will achieve all of your dreams as you apply the same drive you have shown your whole life!  Good luck, we can’t wait to see what you do!

The Ear Community Organization
and our board members
www.EarCommunity.org

Ryle Austin Rabaya of the Philippines, bilateral Oticon Medical Ponto recipient, July 23, 2019.

Ear Community is pleased to introduce you to Ryle Austin Rabaya who lives in the Philippines with his mother, Arlyn, and his father. Austin is only one year old, his birthday was in June. He was born with Bilateral Microtia and Atresia. Even though Arlyn and her husband had no answers when Austin was born, they took him to every specialist they could find to find out what their options were to help Austin hear. They were so worried that he would struggle in his day-to-day life without access to sound.

It was very important to Austin’s parents that he grew up with typical language and speech – that he would be able to attend school, make friends, and interact with the world around him. Due to having Bilateral Microtia and Atresia, the only way that would be possible is by having Bilateral bone conduction hearing aids. Around the time that Arlyn was working tirelessly for answers, she came across the Ear Community Organization.

She soon reached out to us, and applied immediately for her little boy, Austin was only a few months old at the time. She said, “We have great and high hopes and dreams for our son to achieve, and we know and are confident that with the use of (a) BAHS device, he will be able to achieve and accomplish so much more in life, as he continues to grow.” We knew we had to help little Austin gain equal access to the sounds of the world around him!

It took some time and hoop jumping, but after some waiting – on Tuesday, July 23rd, 2019, Austin finally received his two Oticon Ponto processors! Arlyn said, “we’re very thankful to Oticon Medical and to Ear Community. I can’t explain what I’m feeling right now, all I know is that I am very happy for my son knowing that from now on, he can hear the world clearly and can live a normal life.” When Austin was fitted with his new Pontos, his face lit up and he looked around the room, it truly warmed every heart in the office that day. Austin’s family is truly thankful for everyone that was involved in helping their son receive his hearing devices so he could hear his very best.

Ear Community would like to extend a special ‘thank you’ to Oticon Medical, who has always supported our efforts to bring sound to every individual who needs access to sound. To Icee Piedad and Patrick Tan, who represent Oticon Medical in Asia, thank you for your tireless efforts to get Austin his Ponto’s. Ear Community would also like to extend a special thank you to Alex and Kristina Kosoglyadov for donating $200 toward helping Austin hear better by helping with the shipping of his new hearing devices. The Kosoglyadov Family donated to Ear Community, requesting that a donation in their daughter, Amelia’s, name go toward helping another child hear. Together with the Kosoglyadov family and Oticon Medical, Arlyn was able to receive the gift of hearing for her son, Austin. Thank you again to the Kosoglyadov Family for helping give back to the Microtia and Atresia community through our Ear Community Organization and for helping another child hear better.

A very special thank you to Alan Raffauf, Vice President of Marketing and Operations for Oticon Medical US, for choosing to donate the two new Oticon Medical Ponto 3 Superpower hearing devices to Ear Community so that they could be donated to Austin to help him hear better. Thank you to Beverly Ostrowski, Director of Customer Service, with Oticon Medical for helping ship Austin’s hearing devices. 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 beyond thrilled for Austin and what life holds in store for him! It takes many people, doing good work and extending a passion for helping others to make things like this happen. We hope to be able to continue this work for years to come, and helping many more children like Austin. The sky is bright, and the world is ready for you, Austin – we can’t wait to see what you do!

The Ear Community Organization
www.EarCommunity.org

Heidi and Tom Jeffs with their daughter, Rosalee, presenting about the Ear Community Organization and sharing their journey to a prosthetic ear at a Microtia and Atresia symposium for families hosted by Dr. Russell Griffiths

In the early days of 2012, I knew nothing about Microtia and Atresia.  The day my daughter, Rosalee, was born changed all of that.  Rosalee was born via c-section.  After she was born, my husband went with the nurses to check her, count fingers and toes, all the things.  It was then that they noticed she was missing something – a left ear.  I was still on the operating table when my sweet husband brought Rosalee all bundled up to show me her beautiful face.  He didn’t want me to know about her little ear while the doctors were still stitching me up – so he said nothing about it.  She was then whisked off to the NICU and he followed.  A little while later, I was in the recovery room with a nurse telling me to “take deep breaths” because my oxygen stats were dropping.  A nurse abruptly walked in and announced to me, “so your daughter doesn’t have an ear on one side.”……and then she left.

A baby being born is a big deal in and of itself.  When something happens that isn’t anticipated, it can be earth shattering.  So many thoughts raced through my mind in those early days of Rosalee’s life.  Would she be able to appreciate music the way I do?  Will she struggle in school?  Will kids make fun of her?  How will we as her parents handle all of that, and how will we help her in the most beneficial way?  We were so blessed to have been referred to a pediatric plastic surgeon when Rosalee was four months old.  Dr. Russell Griffiths answered all of our questions, and gently explained the options that were available to us.  It was at that time he also shared with us about Ear Community.  That appointment changed our lives forever, and shifted our journey to one of education, hope, and peace.

I have been fortunate to be a part of Ear Community for a little over six years.  Because of Ear Community, I have made friends all over the world who have children with little ears just like my Rosalee.  Because of Ear Community, I became a parent-expert on Microtia and Atresia in days; surpassing our pediatrician and early intervention team as far as the depth of knowledge I gained through the website.  Because of Ear Community, I have been a part of supporting college students further their educational journey.  Because of Ear Community, I have been a part of changing lives around the world through the donation of bone conduction devices.  I have found a true friend in Melissa Tumblin, who is one of the best humans I have had the fortune of knowing.

Through my journey with Ear Community, I found myself being invited by Dr. Russell Griffiths to talk at his recent Microtia Symposium in Boise, Idaho.  Dr. Griffiths has been a long-time supporter of Ear Community, and we are so grateful for his donations to our organization.  As a parent-advocate, I have a unique perspective in the journey we have taken with Rosalee.  I was able to share how we have taken Rosalee’s lead on what she wants to do about her little ear – our philosophy is that it is her body and she should get a say in what happens as far as surgery goes.  A few years ago she wanted to get a ‘big ear’ but definitely did not want surgery.  I was able to share at the symposium about our experiences with Paul Tanner, an anaplastologist in Salt Lake City who creates prosthetic ears through 3-D printing.

I was fortunate to connect with families in my neck of the woods, as well as from all over the country – there was even a family that had traveled all the way from New Jersey!  I am grateful for the opportunity to share about our journey, about the treasure of information that Ear Community is, and have a special day with other Microtia families.  I must say, Rosalee’s prosthetic ear was a big hit – many families wanted to come and look at it and handle it!  I consider myself so fortunate to be a part of an organization like Ear Community that educates families on all of the options available in a truly unbiased manner.

Thank you to Dr. Griffiths and his team for inviting us out, and allowing me some time to share about Ear Community.  Thank you to Star and Angie for working out any kinks and answering all of my questions.  Thank you to Melissa Tumblin for creating Ear Community and changing my life and my daughter’s life.  Parent and Patient advocates can be such a force for good, and I hope to be able to continue my work in helping other families who are new to this journey.  We are all in this together, we don’t always have the answers, but we are never alone in this path.
– Heidi Jeffs
Events Manager
Ear Community

The VUMC MAC clinic from left: Ron Eavey MD SM (ENT Clinical Director and Chair), Brandy Stephens AuD, Melissa Tumblin (Ear Community), Sharon Johnson RN, Scott Stephan MD , Keisha Conway (clinical coordinator), Stephanie Claybrooks RN, Alejandro Rivas MD and Meghan Geiser ENT admin.

On Saturday, July 20th, 2019, Vanderbilt University Medical Center hosted the 4th Annual Microtia and Atresia educational conference at Monroe Carell Jr. Children’s Hospital. We had nearly 100 parents and individuals join us this year at our MAC (Microtia Atresia Clinic) conference. Attendees learned about all of the options available for Microtia and Atresia and were able to meet with medical professionals to get answers to their questions. A parent panel helped families who have had surgery at Vanderbilt University Medical Center share their experiences with conference attendees. On site childcare was available for FREE during the conference, providing entertainment and fun crafts for children who attended. ASL and closed captioning was available.

2019 Vanderbilt University Medical Center Microtia and Atresia conference.

The conference included presentations made by the following Microtia and Atresia Clinic staff members:
Ron Eavey, MD, SM (ENT Clinical Director) – Welcome, Microtia and Atresia research, rib graft surgery including soft tissue repair
Scott Stephan, MD – Medpor outer ear reconstruction and CAM (Canalplasty w/Medpor one stage surgery) and what to expect
Alejandro Rivas, MD – Canalplasty, aural atresia repair, CAM (Canalplasty and Medpor one stage surgery) and BAI hearing devices
Brandy Stephens, AuD  – Hearing management and bone anchored hearing implants
Scott Fiscus, BCO – Anaplastology and ear prosthesis
Parent Panel

Nashville, TN

Scott Stephan, MD (Vanderbilt University Medical Center – ENT), Kole Shuda, Melissa Tumblin (Ear Community), Ally Tumblin (Ear Community), Rachel Songy (Ear Community board member), Hailey Tumblin (Ear Community), Noelle Smith, Melissa McClellan (Ear Community board member) and Alejandro Rivas, MD (Vanderbilt University Medical Center – ENT).

The Hurley Family: Travis and Dayla w/ Brilee, Brooklyn and Brody along w/Melissa, Ally and Hailey Tumblin (Ear Community)

On Saturday, July 20th, the Ear Community Organization and Vanderbilt University Medical Center’s Microtia and Atresia Clinic hosted their 4th Annual Microtia and Atresia picnic together with nearly 200 attendees. Everyone enjoyed a lovely picnic day at the Vanderbilt University recreation center where the kids enjoyed getting their faces painted, balloon art, a magician and outdoor fun. Brody Hurley, along with his mom, Dayla, and father Travis, including his siblings Brilee and Brooklyn, helped host our picnic (patients of the Vanderbilt University Medical Center). The Hurley family shared their experience with Brody having bilateral Microtia and Atresia and their decision to aid and implant Brody with two bone anchored hearing devices to help him hear better. The Hurley family also shared with everyone how much Ear Community means to their family and how much the organization has helped them with resources and support. The Founders of Ear Community, Melissa, Hailey, and Ally Tumblin, also joined us at this year’s Ear Community picnic in Nashville. The Ear Community Organization (including the Tumblin Family and board members Melissa McClellan and Rachel Songy) honored the Vanderbilt MAC clinic and staff with an award recognizing the clinic as an international center for excellence and for helping so many Microtia and Atresia families.

Everyone enjoyed beautiful  music performed by Kole Shuda and Noelle Smith who were both born with Microtia and Atresia, which made everything even more special knowing that our children can go on to become anything they want to in life. Attending families were given the opportunity to try on hearing devices and learn about outer ear implants thanks to our Ear Community Sponsors:
Platinum Sponsors – Cochlear Americas (Baha 5) and Oticon Medical (Ponto 3 & 4) 
Silver Sponsors – Stryker (Medpor) and MedEL (ADHEAR and Bonebridge) and learn more about prosthetic ears and The Vanderbilt University Medical Center ENT staff (Drs. Eavey, Stephan, and Rivas, along with Dr. Stephens AuD, Scott Fiscus BCO) joined us wearing our “Vandy Microtia Kids Rock” t-shirts during our picnic portion of the event. Everyone enjoyed the day and we look forward to seeing so many of you again each year at our Vanderbilt University Medical Center Microtia and Atresia conference, clinic, and Ear Community picnic! Everyone also enjoyed a delicious picnic catered by Jim ‘N Nick’s BBQ.

Here are some fun memories from our Vanderbilt and Ear Community picnic event:

Wednesday – June 26th, 2019

Ear Community honors Dr. Jon Seidman with award at Harvard, 6/2019

Ear Community Founder, Melissa Tumblin (and her children Hailey and Ally) along with Samantha Sclafani (and her children Wyatt and Tatum) had the opportunity to meet with Drs. Jon and Christine Seidman of Seidman Labs at Harvard Medical School when hosting the Boston Ear Community Microtia and Atresia picnic. We also had the opportunity to meet with Barbara McDonough and Angela Tai, who are two of the very researchers working on our samples in the lab in regards to our whole genome sequencing research grant the organization is on.