Ear Community and Oticon Medical help 8 year old New Jersey girl hear during COVID-19

Pictured: Isabella with her mom at her audiology fitting for her 2 donated Oticon Medical Pontos in New Jersey, April 8th, 2020.

Meet Isabella, Ear Community’s newest bone anchored hearing aid recipient! Isabella lives in New Jersey with her family, originally moving from Venezuela. She is 8 years old and was born with bilateral Microtia and Aural Atresia. As Isabella started school, she began struggling with her hearing due to having hearing loss in both ears. As it turns out, Isabella has many advocates looking out for her, who are in her corner.

Isabella is in 1st grade. Shortly after beginning school, Isabella was able to have a hearing test conducted through the school system. Isabella’s school audiologist, Dr. Stephanie Garcia, helped Isabella obtain two loaner Oticon Medical Ponto 3 Superpower hearing devices to help her have access to sound at while at school. Isabella thrived, she just lit up with positive facial expression and truly enjoyed hearing sound through these hearing devices. Isabella’s teacher even reported her participating in classroom discussions, how she wanted to help others and how social she had become.  Isabella also had access to the Ponto 3 Superpowers at home as well. Her parents said that she wore them all the time from morning until nighttime.  They enjoyed being able to see their daughter participate and communicate with everyone around her.

Sadly, the loaner period for these two bone anchored hearing devices ended and Isabella was back to not being able to hear at both school and at home. Dr. Garcia went on a mission to help Isabella obtain access to sound, but this time permanently. Dr. Garcia teamed up with Dr. Laura Sylvia (an educational audiologist and speech-language specialist) along with Mrs. Kerry Shelby (a teacher of the Deaf and Hearing Impaired) to find resources to help Isabella so she didn’t fall through the cracks and revert back to struggling to participate in a hearing world. In February 2020, Drs. Garcia and Sylvia along with Ms. Shelby reached out to our Ear Community Organization to see if we could help.

After receiving Isabella’s application for a hearing device, Ear Community’s Board of Directors were excited to help Isabella obtain two Oticon Medical Ponto 4’s, including a microphone for help hearing her teacher in the classroom, in social situations and while at home. Our organization is happy to help Isabella hear her best so she can thrive, everyday! Shortly after Ear Community offered to help Isabella obtain hearing devices, the world slowly began shutting down from the COVID-19 pandemic, putting Isabella’s fitting on hold for her new hearing.

Through the passionate work from our friends at Oticon Medical and the need to help Dr. Garcia, Isabella was fitted with her Ponto 4’s on April 8th, 2020. A special appointment was scheduled, even during a pandemic, to help Isabella hear! Ear Community is honored to be a part of the passionate team that made Isabella’s hearing a priority during this uneasy time in the world.

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 4 hearing devices and microphone to Ear Community so that they could be donated to help Isabella hear. Thank you to Beverly Ostrowski, Director of Customer Service, with Oticon Medical for helping ship Isabella’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 also wish to say “thank you” to Drs. Garcia and Sylvia and Mrs. Shelby for their tireless efforts to help Isabella hear. Ear Community also wishes to thank all our donors who choose to donate to our cause, helping make life-changing moments like these happen for children and adults in our community.

Isabella – we hope the world opens up to you now that you can interact through sound with all those around you. We are so happy for you and proud of how far you’ve come thanks to hearing device technology and some love and advocacy in the world. Thank you for allowing us to be a part of your better hearing journey. We wish you the very best!
Melissa Tumblin
Founder – Executive Director
The Ear Community Organization
www.EarCommunity.org

The Ear Community Organization donates a bone conduction hearing aid to a child in need during COVID-19

Naomi Haagenson receives donated BAHA from Ear Community during COVID-19

Last week, on March 17th, this sweet little girl in Denver, CO received the gift of hearing from our Ear Community Organization! Meet Naomi Haagenson! Both of Naomi’s Cochlear Americas Baha 5 bone anchored hearing aids broke within one week of each other. Our organization saw the need to help Naomi and wanted to help her hear!

A very special thank you to Dr. Mary Finkbone (audiologist in Washington, D.C.) who donated this hearing device to our board member, Rachel Songy (Dr. Finkbone is her audiologist). I know both Dr. Finkbone and Rachel Songy are very happy with helping a child in need be able to hear. Thanks to this donation from Rachel and Dr. Finkbone, a little girl is able to continue to hear during COVID-19. Naomi would have been deaf without these specialized hearing devices during these pandemic times.

Here is Elise and Naomi’s story:
“This is the face of one extremely happy girl.
Why?
Because she can hear!!!

Thank you to the Ear Community Organization, an incredible non-profit organization that helps Microtia and Atresia families, for your donation of a gently used BAHA 5 Power to my daughter! This donated hearing aid has put my daughter back into commission and as you can tell, she’s not mad about it! “The original Bahas that Naomi had were purchased out of pocket by her family as their insurance provider did not cover this hearing device for her, says Melissa Tumblin. This little girl would have been deaf curing a pandemic.”

Naomi loves her hearing aids so much! While Naomi was needing hearing aids to hear and asking her dad to help her, little did she know that he was on his way to pick up the donated hearing device from Ear Community.

What a beautiful surprise!!

I’m thankful for an organization like Ear Community, because of this organization was able to help my daughter hear again with a bone anchored hearing aid! Because our family had to originally pay for Naomi’s bone conduction hearing devices out of pocket, we know how expensive they are! Our insurance provider does not offer insurance coverage for Naomi’s hearing device. This is exactly why we all need to continue to write and call our local Congress to help pass Ally’s Act, H.R. 5485.”

The Ear Community Organization is very happy to help Naomi hear and we are happy that she can carry on with her family while at home and in home school during COVID-19.

Thank you!
Ear Community
www.EarCommunity.org

Ear Community Summer Picnics for Microtia and Atresia Families – 2020


Ear Community is a 501c3 nonprofit organization that helps Microtia and Atresia families around the world. Ear Community is proud to host six family picnics in the United States this year! Microtia and Atresia, Hemifacial Microsomia, Goldenhar Syndrome, and Treacher Collins families…please join us!

Our summer picnics provide a wonderful opportunity for everyone to come together in the same situation, share experiences, and maybe even make a new friend. Lunch will be provided and there will be lots of fun for the kids. Representatives from hearing device companies will be available so you can learn more about the latest bone conduction hearing aids and try these hearing devices on if you haven’t had the chance to do so already. We’ll have representatives from various medical device companies with helpful options for Microtia and Atresia as well helpful ear reconstructive surgeons, ENTs, audiologists, anaplastologists, and therapists mingling with all of us to help us find answers to our questions.

So, please enjoy a FUN and FREE day out with the kids! Please RSVP to the following hosts at a picnic near you. We look forward to seeing everyone this summer! – The Ear Community Organization

Virginia Ear Community Picnic
Richmond, Virginia

Date:  Saturday, June 6th, 2020
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityVirginiaPicnic@gmail.com

Texas Ear Community Picnic
Houston, Texas

Date:  Saturday, June 13th, 2020
Time:  11AM to 3PM
* This event is in collaboration with Texas Children’s Hospital Microtia and Atresia clinic
RSVP to Heidi at:  EarCommunityTexasPicnic@gmail.com

Arizona Ear Community Picnic
Mesa, Arizona
Date:  Saturday, June 13th, 2020 
Time:  11AM to 3PM
RSVP to Heidi at:  EarCommunityArizonaPicnic@gmail.com

Tennessee Ear Community Picnic
Nashville, Tennessee

Date:  Saturday, July 18th, 2020
Time:  1PM to 5PM
* This picnic is in collaboration with the Vanderbilt Microtia and Atresia conference
RSVP to Melissa at:  TennesseeEarCommunityPicnic@gmail.com

California Ear Community Picnic
Palo Alto, California
Date:  Saturday, July 25th, 2020
Time:  11AM to 3PM
* This event is in collaboration with Stanford’s Microtia and Atresia clilnic
RSVP to Melissa at:  EarCommunityCaliforniaPicnic@gmail.com

Pennsylvania Ear Community Picnic
Cranberry Township, Pennsylvania
Date:  Saturday, August 1st, 2020
Time:  11AM to 3PM
* This event is in collaboration with the University of Pittsburgh Medical Center Microtia and Atresia clinic
RSVP to Heidi at:  EarCommunityPennsylvaniaPicnic@gmail.com

A special thank you to all of our Ear Community sponsors
for helping make our events possible!
Thank you to our Platinum Sponsors
Cochlear Americas – Osia 2 System and Baha 5
Oticon Medical – Ponto 3 and Ponto 4
Thank you to our Silver Sponsors
Med-EL – ADHEAR
Stryker  – Medpor
Thank you to Vanderbilt University Medical Center and the Microtia and Atresia Clinic
We look forward to seeing everyone again this summer at an Ear Community picnic near you!
Everyone at the Ear Community Organization!

FDA clears Cochlear’s innovative new Osia® 2 hearing implant system

The Osia System is a first-of-its-kind hearing implant system for people with SSD, conductive or mixed hearing loss.

Centennial, Colo. (December 11, 2019) — Cochlear Limited (ASX: COH), the global leader in implantable hearing solutions, announces today the U.S. Food and Drug Administration (FDA) clearance of the new Cochlear Osia® 2 System. The Osia System is the world’s first active osseointegrated steady-state implant (OSI), a new category of bone conduction hearing solutions that uses digital piezoelectric stimulation to bypass damaged areas of the natural hearing system to send sound vibrations directly to the inner ear (cochlea).

The system features the new Osia OSI200 Implant that attaches to an osseointegrated BI300 Implant to send sound through the bone. The thin profile and monolithic design of the implant help to simplify surgery for the system. On the outside, the new Osia 2 Sound Processor captures sounds and sends both the sound signal and power to the internal implant. The Osia System is available to treat hearing loss associated with an array of conditions including chronic otitis media (COM), otosclerosis and atresia/microtia. In the U.S., it can be used by adults and children 12 years and older with conductive hearing loss, mixed hearing loss and single-sided sensorineural deafness (SSD). The system delivers high power and gain and has a fitting range up to 55 dB sensorineural hearing level (SNHL).1,2

The principal innovation of the Osia System lies in the heart of the implant, which contains the Piezo Power™ transducer made of piezoelectric material. The design is completely different than traditional bone conduction transducers, and with no movement between the parts, it is designed to deliver long-term performance and durability when implanted. Driven by a wireless digital link, this transducer expands and contracts to create powerful vibrations that stimulate the inner ear while optimising transfer of power and sound quality.3 Piezoelectricity has been used for years in many products like microphones, high-end speakers and medical equipment, but this is the first time it is being used in this type of hearing implant application. One of the many advantages of the Piezo Power transducer is its ability to amplify high frequencies, the area of sound most important for speech understanding.

“At Cochlear we have been working to develop this technology for quite some time,” said Mats Dotevall, Director of Design and Development and Director of Clinical Affairs at Cochlear Acoustics. “We aimed to leverage Cochlear’s long history of innovation in both the cochlear implant and bone conduction implant spaces to create something entirely new. Rather than implanting a conventional electromagnetic transducer, we chose to work with piezoelectric material because of its unrivalled suitability for this type of implanted application. Lifetime testing shows Piezo Power technology provides powerful and consistent performance over time.”4

The Osia System has shown excellent results following a one-year, multicenter clinical investigation on a first-generation device, as well as in limited release in some clinics performing sponsored research around the world. Results of the multicenter clinical investigation show a significant improvement in patients’ ability to hear in both noise and quiet compared to unaided and aided preoperative testing.5 The Osia System has also yielded a significant improvement in ratings of patients’ overall health-related quality of life, also when compared to both unaided and aided preoperative testing.5

Findings from the full one-year clinical investigation and other data on the Osia System will be presented by the research centers at the upcoming OSSEO 2019 International Congress in Miami Beach, Florida December 11-14, 2019.

“We are thrilled to introduce the new Cochlear Osia System, a first-of-its-kind innovation in implantable hearing solutions,” said Rom Mendel, President of Cochlear Acoustics. “The Osia System was developed through our efforts to listen to the recipients and clinicians who utilize our hearing implants every day. So far, we have been overwhelmed by the positive reception of the Osia System by both clinicians and patients, and it’s been incredible to see the improvement in recipients’ lives as they are able to hear better in the areas where we know they struggle.”

The Osia 2 Sound Processor is slim and sits off the ear, providing discreet, comfortable hearing. It features the advanced signal processing and wireless connectivity technologies available with Cochlear’s leading acoustic implant systems, such as Made for iPhone technology, and it is compatible with Cochlear’s True Wireless™ accessories. The new Osia Smart App lets the user adjust the sound processor easily from a compatible smartphone or Apple Watch®.* The sound processor comes with five changeable color cover options. Additionally, the Osia 2 Sound Processor is dust and moisture resistant, and with an optional Aqua+ waterproof accessory, recipients can enjoy water activities with sound.**

The Osia 2 System will soon be available in select clinics across the United States as a part of a limited release. Full commercial availability for eligible patients is expected in early 2020. Health Canada approval for the Osia 2 System is expected in early 2020. Availability in other countries is subject to regulatory approvals.

For further information on the Osia System, visit Cochlear.us/Osia.

References

  1. Osia System Datasheet. D1618102. Cochlear Limited, Sweden 2019
  2. Dotevall M. Technical Report: Available Gain in Osia vs Baha 5 Power. D1664198. Cochlear Bone Anchored Solutions AB, Sweden 2019
  3. Sunnerud H. D1575584, Design Verification Report Osia System. Cochlear Bone Anchored Solutions AB, Sweden 2019
  4. Goh J. OSI200 Implant Accelerated Life Test Reporter. D1439967. Cochlear Bone Anchored Solutions AB, Sweden 2019
  5. ClinicalTrials.gov [Internet]. Bethesda (MD): National Library of Medicine (US); 2017 March 22. Identifier NCT03086135. Clinical Performance of a New Implant System for Bone Conduction Hearing; 2019 January 31 [cited 2019 June 20]; [4 screens]. Available from: https://clinicaltrials.gov/ct2/show/NCT03086135

* For information on sound processor and app compatibility, visit www.cochlear.com/compatibility.

** The Osia 2 Sound Processor is IP57 rated with battery compartment excluded. The Osia 2 Sound Processor with Aqua+ is water resistant to level IP68 of the International Standard IEC60529 when used with LR44 alkaline or nickel metal hydride disposable batteries. Refer to the relevant User Guide for more information. The Osia 2 Aqua+ may not be available in all markets and is subject to regulatory approval and product availability.

Apple Watch and iPhone are trademarks of Apple Inc., registered in the U.S. and other countries.

Cara Lippitt

Cara Lippitt is the Public Relations and Marketing Manager at Cochlear Americas. She is responsible for consumer marketing social media and blog content. Cara is inspired by the stories of the recipients that she is able to tell and the incredible journeys they have taken. Cara was born and raised in Colorado and adores the mountains, snow and the world of musical theatre.

 

Ear Community proudly awards its 14th college scholarship

Kuauhtemoc Gonzalez, 14th Ear Community college scholarship recipient, from California – attending MIT

Ear Community would like to introduce you to Kuauhtemoc Gonzalez, a college Freshman at the Massachusetts Institute of Technology (MIT). Kuauhtemoc was born with Microtia and Atresia of his right ear as well as severe color blindness. Growing up in California with his parents and two younger brothers, Kuauhtemoc was surrounded by friends and family who had concerns about him struggling with hearing and the appearance of a Microtic ear. He was regularly asked if he wanted to have cosmetic surgery to “correct” his appearance. While Kuauhtemoc knew that these questions came from a place of love, he didn’t like that there was so much focus on his ‘abnormality’ and its potential limitations.

Kuauhtemoc did not let any of that slow him down. He developed a growth mindset early on and focused on how he could improve versus the challenges he had. Growing up, he played soccer and baseball – he even earned a black belt in karate – no small feat! Kuauhtemoc also focused on his academics and managed to maintain high grades in advanced placement courses in school, graduating in the top ten of his class!

Kuauhtemoc’s dream was to attend MIT and study computer science. He has always had a fascination with being able to program a machine so that it would perform a task with high accuracy. He was also interested in the diversity of industries where computer science can be applied like artificial intelligence and virtual reality. He knows that these technologies can be improved to assist humanity and make the
world a better place. Kuauhtemoc wanted to be a part of that change to make the world a better place through the use of technology.

Growing up in a family with three boys, he knew that paying for college would be a struggle for his parents. So Kuauhtemoc searched online for resources to help alleviate some of the financial burden. He googled “microtia scholarships” and found Ear Community’s College Scholarships. He was so excited because he met the requirements, having never had reconstructive surgery. This was one of the few times that he felt particularly lucky to have Microtia and Atresia and chose not to have surgery. He didn’t want to give up on his dream of attending MIT, so he applied for a scholarship through Ear Community because he didn’t want to miss out on the incredible education he would gain just because of financial need.

Ear Community’s board of directors reviewed Kuauhtemoc’s application and were touched by his drive and determination to carve out a top-notch education for himself. Our board of course voted to help him with his educational endeavors with a scholarship of $750. When he was notified of the board’s decision, Kuauhtemoc thanked Ear Community for such a wonderful gift, and promised to pay it forward one day.

We are honored to be a part of Kuauhtemoc’s journey, and with the perseverance he has, we know he is going to be a bright star in the technology industry. Good luck with your education, Kuauhtemoc, we can’t wait to see what you do in the future!Everyone at the Ear Community Organization!

www.EarCommunity.org

Ear Community in the news – advocating for Ally’s Act, H.R. 5485

Ally’s Act, H.R. 5485

The Ear Community Organization began advocating in February of 2019 for hearing device insurance coverage. There are many people who have come together to help advocate for hearing device insurance coverage with Ear Community. Both, Rachel (Ear Community Board Member) and Melissa Tumblin (Ear Community Founder) diligently worked together on this bill along the side of Congressman Neguse and his staff. Our bill was also reviewed by many medical organization’s with suggestions being made to it as part of the approval process prior to the introduction of this bill, Ally’s Act H.R. 5485. With the help of many Ear Community family members, educators and medical professionals, the community is making progress on gaining co-sponsorship for Ally’s Act, H.R. 5485, a bipartisan national level bill that will ensure private insurance providers cover osseointegrated hearing devices including bone anchored hearing aids and cochlear implants for children and adults, including coverage toward surgery costs, accessories, medical appointments and aural therapy services.

H.R. 5485 was introduced by Congressman Joe Neguse, who represents Colorado’s 2nd Congressional District, after 10-year-old Ally Tumblin – who lives in Broomfield – wrote to Congressman Neguse asking him to help her advocate to hear better. The bill is titled “Ally’s Act” in her honor. Ally, a ten-year-old from Broomfield, Colorado and a constituent of Congressman Neguse’s, was born without a right ear or hearing canal and therefore requires the use of a BAHA. After Ally’s insurance company denied coverage of her hearing device, her mother Melissa formed the organization Ear Community to help advocate for insurance coverage of these hearing devices to ensure no person is left unable to hear because of private insurance companies’ refusal to provide coverage. The bill is titled “Ally’s Act” in her honor.

“For Ally and others with varying modes of hearing loss, OIDs are miraculous devices that create opportunities for them to actively participate in our communities,” said Congressman Neguse. “I am honored to have the opportunity to work alongside Melissa and Ally to create better access to these devices for individuals throughout our nation. We must ensure that insurance coverage for hearing devices is consistent and fair, to ensure every child can thrive and obtain the healthcare they deserve”

“Hearing device insurance coverage needs to be consistent, offering coverage for all ages on a national level. With a bill in place, we are one step closer to achieving the goal of creating improved, equitable hearing healthcare,” said Melissa Tumblin, Executive Director and Founder of Ear Community. “Hearing is fundamental to early education and speech development and needs to be provided for all those needing hearing assistance.”

“As the only Member of Congress with a cochlear implant, I know from firsthand experience the difference in the quality of life these devices can provide,” Congressman McKinley said.” “Ally’s Act will help thousands of Americans with severe hearing loss gain access to life-changing treatment.”

Many throughout the United States are born with hearing loss due to congenital anomalies, including aural atresia (underdeveloped or absent ear canals) and/or microtia (physically missing ears). OIDs help different forms of hearing loss than traditional hearing aids and are often the only hearing device that can restore hearing for these individuals.

“As someone who was born with severe conductive hearing loss, I know the passage of this bill will improve the quality of life in immeasurable ways for children and adults by creating affordable solutions that have not been available in the past,” said Rachel Songy, member of Ear Community’s Board of Directors. “This bill will be a huge step in helping more people to hear, especially those who have not had that chance before.”

Ally’s Act was originally co-sponsored by Congressmen David McKinley (R-WV) and Mike Thompson (D-CA). Since introduction in January, Congressman Neguse has secured additional support from Representatives Jason Crow (D-CO), Cedric Richmond (D-LA), Brian Fitzpatrick (R-PA), Chellie Pingree (D-ME), Veronica Escobar (D-TX), Peter DeFazio (D-OR), Abigail Spanberger (D-VA) and Tony Cardenas (D-CA).

A growing number of organizations that support Ally’s Act currently include Ear Community, the American Cochlear Implant Alliance, the American Academy of Audiology, the American Speech-Language-Hearing Association, Waiting to Hear, HearStrong, Lemon Aids 4 Hearing, Songs for Sound, Inc, American Tinnitus Association, the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Aid the Silent 98% and the Broomfield, CO City Council.

The following are some news clips that have aired thanks to community advocacy:
Ally’s Act CBS channel 4 news clip https://denver.cbslocal.com/2020/01/02/broomfield-ally-tumblin-allys-act/

Ally’s Act WJHL channel 11 news clip https://www.wjhl.com/news/local/insurance-does-not-find-it-necessary-for-children-to-hear-elizabethton-family-champions-hearing-implant-coverage-bill/?fbclid=IwAR0nAGXa0_g1jqjWwum7WsruflGw0VBgKwzyXgRe93myZVQBdLzQESki-Jg

Ally’s Act WYCB channel 5 news clip https://wcyb.com/news/local/local-family-champions-a-bill-requiring-insurance-coverage-for-high-end-hearing-devices?fbclid=IwAR2fSCAsJH2JK0_rDRylQzbLA_MJGn6oFDJ_7Zhyb6EC4w4eN2vw9qOkWNo

Ally’s Act WCYB channel 5 news clip https://www.youtube.com/watch?v=oL4qy5NLUWo&feature=youtu.be&fbclid=IwAR03Z0gGcnu4DZpe7Zmd3UGxQ787y9p1bCHBuksOf_YIeiPS3ImcRRlVBiw
https://www.9news.com/article/features/broomfield-girl-changing-the-world-by-inspiring-federal-bill/73-0754b87c-4fb7-454e-8742-cd2f602106a2

Ally’s Act Denver channel 9 news clip https://www.9news.com/article/features/broomfield-girl-changing-the-world-by-inspiring-federal-bill/73-0754b87c-4fb7-454e-8742-cd2f602106a2

Related news paper articles to Ally’s Act, H.R. 5485:
Press Release for Ally’s Act, H.R. 5485:  December 20, 2019
CONGRESSMAN NEGUSE INTRODUCES BIPARTISAN BILL TO INCREASE ACCESS TO SPECIALIZED HEARING DEVICES
Link to press release:  https://neguse.house.gov/media/press-releases/2019/12/20/congressman-neguse-introduces-bipartisan-bill-to-increase-access-to-specialized-hearing-devices

Broomfield Youth Helps Spearhead H.R. 5485
Broomfield Endorses Rep Neguse Bill to Ensure Health Insurance Coverage of Hearing Devices
Ally’s Act seeks to increase access to specialized hearing devices
Link to article:  https://broomfield.org/CivicAlerts.aspx?AID=1808

Broomfield Girl Inspires Hearing Aid Legislation
U.S. Rep. Joe Neguse advocates for insurance coverage
Link to article:https://www.broomfieldenterprise.com/2019/12/20/915523/

Broomfield Youth Helps Spearhead H.R. 5485

Ally Tumblin (age 10), with her mother Melissa Tumblin of Broomfield, CO


Broomfield Endorses Rep Neguse Bill to Ensure Health Insurance Coverage of Hearing Devices

Ally’s Act seeks to increase access to specialized hearing devices

Washington D.C.—The city and county of Broomfield, CO has pledged its support for Ally’s Act, a bipartisan bill that ensures private insurance companies provide coverage for osseointegrated hearing devices (OIDs) – including bone-anchored hearing aids (Baha) and Cochlear Implants.

H.R. 5485 was introduced by Congressman Joe Neguse, who represents Colorado’s 2nd Congressional District, after 10-year-old Ally Tumblin – who lives in Broomfield – wrote to Congressman Neguse asking him to help her advocate to hear better. The bill is titled “Ally’s Act” in her honor.

“We’re incredibly excited to see growing momentum for Ally’s Act, bipartisan legislation which will provide critical access to essential hearing devices for individuals across the nation,” said Congressman Joe Neguse. “Ally’s Act is a pristine example of how government is supposed to work. Ally raised her voice and brought this problem to our office, and we were able to respond with legislation that will make a tangible difference in her life and the lives of many others who have been born with similar conditions. We are continuing to work to build support for the bill and make the case for larger consideration in the House.”

“We are so proud of Ally,” said City Councilmember Kimberly Groom. “This fierce young woman is a courageous and selfless advocate for our community and for people of all ages across the country.”

City Councilmember William Linstedt said, “Ally is an inspiration for all of us to stand up for what you believe in, stand up for what is right and to stand up for others. If Ally’s the future of Broomfield, I can’t wait to see what we can accomplish next.”

A letter of support will be hand delivered to Congressman Neguse by Broomfield Mayor Patrick Quinn during an upcoming visit to Washington, D.C.

Ally’s Act was originally co-sponsored by Congressmen David McKinley (R-WV) and Mike Thompson (D-CA). Since introduction in January, Congressman Neguse has secured additional support from Representatives Jason Crow (D-CO), Cedric Richmond (D-LA), Brian Fitzpatrick (R-PA), Chellie Pingree (D-ME), Veronica Escobar (D-TX), and Peter DeFazio (D-OR).

Broomfield joins a growing number of organizations that support Ally’s Act, which include Ear Community, the American Cochlear Implant Alliance, the American Academy of Audiology, the American Speech-Language-Hearing Association, Waiting to Hear, HearStrong, Lemon Aids 4 Hearing, Songs for Sound, Inc, American Tinnitus Association, and the Alexander Graham Bell Association for the Deaf and Hard of Hearing.

For link to press release, click here.

Ear Community proudly awards its 13th college scholarship

Owen Jarvis of West Virginia, Ear Community’s 13th college scholarship recipient (February 2020)

The Ear Community Organization is pleased to introduce our first College Scholarship applicant of 2020, Owen Jarvis! Owen is a college freshman at Marshall University in West Virginia. Owen was born with Right Microtia and Atresia and he said that growing up looking ‘different’ – he was treated like an outsider. But he prevailed and sees it now as a blessing in disguise because it has made him truer to himself, and a much more humble person.

Owen is pursuing a degree in Electrical Engineering, which has always sparked an interest for him.
Because Owen has never had surgery, and does not wear a bone conduction device he sits close to his professor to be able to catch all of the auditory information he needs to succeed in his classes. Even with this obstacle, he managed a 3.64 GPA and made the Dean’s list last semester!

When he was looking for financial assistance for his college career, Owen did a general search for “hearing loss scholarships” and “microtia and atresia scholarships” and came upon Ear Community’s College Scholarship opportunities. After reading through the qualifications he knew that he was a candidate and quickly reached out to us.

In Owen’s application letter, he thanked Ear Community for our efforts with Ally’s Act and has just been an enjoyable young man to interact with. Our Board of Directors voted to help him with a $750 scholarship to help him in his academic endeavors. This world needs young people like Owen who have a good head on their shoulders, a kind heart, and an eye to the future. Owen, we wish you the best of everything and cannot wait to see what you accomplish in the years to come!

We are so happy for you, Owen!
Congratulations from everyone at Ear Community!
www.EarCommunity.org

Help make Ally’s Act the law!

Please support Ally’s Act and make it the law!

Ally’s Act, H.R. 5485

Ally’s Act, H.R. 5485 is a national level bill that was introduced on December 18th, 2019 ensuring that private insurance companies provide coverage for osseointegrated hearing devices (“OIDs”), including Bone Anchored Hearing Aids (“BAHA”) and Cochlear Implants (“CIs”). So many of us have had our private insurance providers deny coverage for these very hearing devices for our children and adults. Even our hearing exams and appointments with ENTs and audiologists are costly, including the fittings and programming of these devices, surgery and post-operative care appointments. Ally’s Act would help ensure that private insurance providers cover these costs including the cost of these hearing devices and their accessories, surgery and medical exams as noted in our bill. If Ally’s Act becomes the law, this bill would help thousands of children and adults of all ages have insurance coverage for these devices here on out.

We need everyone’s support to help Ally’s Act become the law! Please contact your local congressmen/women and ask them to co-Sponsor Ally’s Act, H.R. 5485Ally’s Act has been assigned to the House Committee of Energy and Commerce. We must first focus on asking congress members of this committee to co-Sponsor Ally’s Act (link to HC&EC here). If there is not a representative for your state who sits on the House Committee of Energy and Commerce, please also contact your local representative. If you are not sure who your local representative is, you can find out who your local representative is at the following link here.

* We need as many co-Sponsors as we can get to help make Ally’s Act the law (we need 290 co-sponsors)!

Ally’s Act would provide the following for every state:
1. Coverage for a BAHA or CI device.
2. Upgrade replacement of these hearing devices every 5 years
3. Cover accessories including softband head band, hard band and adhesives.
4. Cover repairs for these devices
5. Cover (1) hearing assessment per year
6. Cover (1) preoperative assessment per year
7. Cover implantation surgery
8. Cover post-operative medical appointments
9. Cover post-operative audiological appointments for fittings, programming and activation
10.Provide aural services related to the use of this device.
(NEGUSE_Ally’s Act_067_xml)
* You may also follow the status of Ally’s Act as it moves through congress at this link here.

CBS News 4 Denver News Clip

Congressman Joe Neguse (D-CO), who serves as a member of House Leadership and is the Vice Chair of the Medicare for all Caucus, introduced legislation, co-lead by Congressman David McKinley (R-WV) and Congressman Mike Thompson (D-CA) both co-Chairs of the Hearing Health Caucus, to ensure that private insurance companies provide coverage for osseointegrated hearing devices (“OIDs”), including bone anchored hearing aids (“BAHA”) and cochlear implants. Ally Tumblin, c0-founder of Ear Community, wrote to Congressman Neguse asking him to help her advocate for hearing better and he listened! Congressman Joe Neguse titled the bill “Ally’s Act” in her honor. (link to Press Release here)

Here is some helpful information: (request a letter and call script via e-mail EarCommunity@gmail.com)
1. Example boilerplate template letter (word doc) (Boilerplate Ally’s Act letter)
    Example boilerplate template letter (pdf) (Boilerplate Ally’s Act letter)

2. Example call script to a local representative (word doc)
(Example call to Congress rep about Ally’s Act)
Example call script to a local representative (pdf)
(Example call to Congress rep about Ally’s Act)

More information on Ally’s Act in the press:
“Broomfield girl inspires hearing aid legislation”

Broomfield Enterprise
Boulder Daily Camera

2019 Year End Wrap Up for Ear Community

AND, THAT’S A WRAP FOR 2019!

HAPPY NEW YEAR TO EVERYONE AS WE WELCOME 2020!
As we take a look back at all that our Ear Community Organization did in 2019, we made a HUGE positive impact on our community both here in the US and around the world.

We kicked off the year with our whole genome sequencing research on Microtia and Aural Atresia with Harvard and MIT and the Broad Institute thanks to a grant received from the Gabriella Miller Kids First Pediatric Research Foundation. We are anxiously awaiting the results!

Not only did we advocate on Capitol Hill in Washington, D.C. many times this year for hearing device coverage, we were successful as we were able to have a bill introduced and sponsored by Congressman Joe Neguse (co-sponsored by Congressmen David McKinley, Mike Thompson and Cedric Richmond) that will ensure that private insurance providers offer coverage for Osseointegrated Devices (OID’s), covering bone anchored hearing devices and Cochlear Implants. Some of our Ear Community Families who advocated even had the opportunity to meet Gaten Matarazzo from the hit TV series, “Stranger Things” while on Capitol Hill with the NIDCR/AADR! Ear Community also met with the NIH to discuss current research on craniofacial microsomia and Microtia and Atresia!

While educating at the EHDI (Early Hearing Detection Intervention) meeting in Chicago this past March, we not only were able to update many audiologists, teachers of the D/HOH and a variety of medical professionals along with parents on Microtia and Atresia, but we met Rachel Coleman (actress and producer) of “Signing Time” for ASL learners!

In May, Ally Tumblin, co-founder of Ear Community, was recognized by the HearStrong Foundation for her advocacy on hearing loss and Microtia and Aural Atresia.

And of course we focused on bringing Microtia and Atresia families together once again this year at our educational events! We brought 1,300 people together in 2019 where we had our largest Vanderbilt conference and picnic yet! We also Collaborated with doctors and researchers on the CAUSE study for craniofacial microsomia/MA. We awarded 2 college scholarships and donated 9 hearing devices to children and adults both here in the US and abroad! We also helped many families on their IEP and 504 Plans, appeal for hearing device coverage, wrote and submitted lots of articles, attended the Oticon Medical annual advocacy meeting, Ear Community was spotlighted in a presentation at the Stanford Medicine X Change conference, presented by well respected community leader and entrepreneur, Liz Presson, Founder and CEO of Pursuit, “The Power of Female Patient Advocates: Voices of women who are being heard and evolving healthcare on their own terms” and our organization celebrated our 4th National Microtia Awareness Day on November 9th along with an American Flag flying over the US Capitol in honor of our awareness day! Congressman David McKinley’s office also tweeted about National Microtia Awareness Day! We even had our first edition of holiday cheer t-shirts this year!

Thank you to all of the families in our community for making Ear Community who we are and thank you to all of our amazing sponsors for helping make our events possible and for all of the support we receive.
Thank you to our Platinum Sponsors!
Cochlear Americas and Oticon Medical
Vanderbilt University Medical Center Vanderbilt Bill Wilkerson Center

Thank you to our Silver Sponsors!
Stryker and MED-EL MED-EL USA

A very special thank you to our donors as Ear Community would not exist without your continued support to our organization!

We look forward to seeing everyone in 2020!
Everyone at Ear Community!
www.EarCommunity.org

Link to article on Broomfield girl inspires hearing aid legislation U.S. Rep. Joe Neguse advocates for insurance coverage

Link to press release on Congressman Neguse Introduces Bipartisan Bill to Increase Access to Specialized Hearing Devices

Link to FB story for 2019 Ear Community year end:

https://www.facebook.com/permalink.php?story_fbid=2544897398880916&id=118851728152174&__tn__=K-R

Translate »