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Ear Community goes to Washington with Ponto SuperPowers

Advocacy Day 2019

On February 26, Ear Community was invited to be a part of the 2019 Advocacy Day on Capitol Hill.  This annual event invites advocates on behalf of dental, oral, and craniofacial research to speak directly with federal policymakers about how insurance coverage and research funding would improve the lives of those living with these conditions.

Organizer Melissa Tumblin founded Ear Community and has a daughter, Ally, with Microtia and Atresia who wears a bone-anchored hearing system (BAHS). Melissa was able to arrange the meetings with House and Senate representatives because she sits on the Patient Advocacy Council for the National Institute of Dental and Craniofacial Research (NIDCR).

Melissa and Ally were accompanied by eight other Ear Community families, including one medical doctor, to Washington, D.C. representing the states of Washington, Colorado, Tennessee, Maryland, and Virginia.

Lobbying on behalf of families living with hearing loss and related conditions

On Monday, February 25, Melissa met with directors from the National Institute of Health representing the NIDCR, American Association for Dental Research (AADR), and International Association for Dental Research (IADR) to discuss collaborative efforts regarding children and adults affected by craniofacial challenges due to Microtia and Atresia and Goldenhar Syndrome.

The next day, the Ear Community families met with the following representatives and staff members on Capitol Hill:

  • Staff members for Senator Lamar Alexander’s (R-TN) office
  • Legislative staff members for Congressman Joe Neguse’s (D-CO), Senator Cory Gardner’s (R-CO), and Michael Bennet’s (D-CO) offices.
  • Legislative staff members for Senator Chris Van Hollen (D-MD), and office staff for Congressman John Sarbanes’ (D-MD) and Senator Ben Cardin’s (D-MD).
  • Legislative staff and the press secretary for Congressman Denny Heck’s (D-WA) office and an Appropriations representative for the NIH staff for Senator Patty Murray’s (D-WA) office.
  • Senator Tim Kaine (D-VA), Congresswoman Abigail Spanberger (D-VA), and legislative staff members for Senator Mark Warner (D-VA) and Congressman Ben Cline (R-VA). Sen. Kaine was celebrating his birthday and signed a little girl with Microtia and Atresia named Mazie’s cast. Both Sen. Kaine and Rep. Spanberger tweeted about the Ear Community visit.

Sen. Mark Werner and Ear Community FamiliesRep. Spanberger with members of Ear Community

Melissa also scheduled phone meetings with Congressman David McKinley (R-WV) and Congressman Michael Thompson (D-CA), as they both serve as co-chairs of the Congressional Hearing Health Caucus. Rep. McKinley is a cochlear implant user, and his grandson wears a bone-anchored hearing aid.

Each family left behind a detailed packet of information with the story of the Ear Community organization, an explanation about the need to wear bone-anchored hearing systems, and a sample of anaudiogram along with other helpful facts and figures. Each family explained to legislators and their staff that a bone-anchored device is their only option, because they don’t have the same hearing challenges that qualify others to wear cochlear implants or benefit from traditional hearing aids. Therefore, wearers need lawmakers to work toward mandating bone-conduction hearing device coverage by insurers nationwide. Otherwise, insurance companies are effectively discriminating against thousands of children and adults with hearing loss by not covering these medical devices.

A Stranger Things star gives back

Gaten Matarazzo poses with Ear Community kids for Advocacy Day 2019.

The Ear Community families also received an exciting treat: thanks to the NIDCR and AADR, they were given the opportunity to meet actor Gaten Matarazzo from the hit TV show Stranger Things! He was part of the Advocacy Day non-profit organization lobbying to bring awareness to Cleidocranial dysplasia (CCD), a rare genetic mutation affecting the growth and development of teeth and bones.

Melissa expressed her appreciation to Oticon Medical for lending her two Ponto 3 SuperPower BAHS on soft bands. During her visits, representatives tried on the Pontos and listened to her talk during their meetings, so they could experience for themselves what it’s like to hear through bone-anchored devices.

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Ear Community hosts a series of picnics where Microtia and Atresia families can learn more about Oticon Medical’s Ponto 3 SuperPower. Please click through this link for the 2019 picnic schedule.

Ready to try your first Ponto BAHS or upgrade to our latest model? Click below to get in touch with an audiologist in your area who can help you choose the best option for your hearing needs.

Find a clinic

Click the button if you want to learn more about our Ponto bone anchored hearing systems or arrange a trial.

CardioThoracic nurse, Iris Leak, shares how her Ponto 3 SuperPower makes a difference at work and at home

Working as a CardioThoracic nurse for 27 years, Iris had become accustomed to noisy environments. However, after the removal of a glomus tumor and cholesteatoma, she found herself with conductive hearing loss and challenged to perform her work duties. She began searching for a solution and found the Ponto 3 SuperPower.

The effects of her hearing loss
Iris had been relying on her “good” left ear for some time, but as her hearing loss became more severe it also became increasingly difficult to hear and understand her co-workers and family.

“People at the hospital would have to throw things my way to get my attention because I couldn’t hear them anymore. It was getting more and more difficult to hear in my work environment,” she says.

In social situations, she struggled to keep up with conversations and found her hearing loss isolating her from family and friends. “I’m a talker naturally and I love being around people. But with my hearing loss, I found myself becoming more isolated because I couldn’t hear the conversations and couldn’t participate. I wasn’t myself.”

Finding the right solution
Iris started doing her research. She found support and resources through online Facebook groups like this one and worked with an audiologist who helped her understand her options. She demoed different bone anchored hearing devices and ultimately chose the Ponto.

In November of 2017, she had the Minimally Invasive Ponto Surgery (MIPS) and received her Ponto 3 SuperPower in January of 2018. To ensure her abutment was placed in the best position to accommodate her reading glasses and CPAP (Continuous Positive Airway Pressure) mask she brought her glasses and mask to her surgeon to mark the abutment site. When she received her Ponto on the abutment for the first time she immediately put it to the test. “I went out to eat afterward, and I picked the noisiest place I knew—the mall. It was amazing! I love hearing and I feel like myself again.”

As Iris has grown more accustomed to her new world of hearing, she’s started using Ponto’s accessories like her Oticon Medical Streamer, which she describes as “game-changing”. “I hadn’t listened to music in years, but now it’s possible with my Ponto 3 SuperPower and Oticon Medical Streamer.”

Iris’s advice for those looking at a hearing loss solution is to remember nothing is perfect. Do your research to find the solution that is best for you.

Find a clinic

Click the button if you want to learn more about our Ponto bone anchored hearing systems or arrange a trial.

Advocating for a better solution – Dominic’s journey to the Ponto 3 SuperPower

When Caroline Mannato’s son, Dominic, was born with unilateral microtia and atresia she worked with her audiologist to quickly have him aided with a bone anchored hearing system (BAHS). At six months old, he received his first BAHS, however, acoustical feedback was a constant issue.

“He has curly hair and the curls kept hitting the device and just from his hair, it would create feedback. It was constantly buzzing. I realized within the first few weeks this was not acceptable.” – Caroline Mannato

Caroline enrolled her son in an early intervention program to do monthly speech evaluations and through this program, she was able to connect with another mother whose daughter also had microtia and atresia.

“I invited her over for coffee and she brought her daughter’s Ponto device. I mentioned my feedback issues and she said they hadn’t experienced any. We compared my device to hers and I asked her ‘how do you turn it on’. She said it was on – it wasn’t vibrating or making any noise. I had mixed emotions thinking ‘why don’t I have this for my child’.” – Caroline Mannato

The Mannato family began researching and going to hearing events around the country trying to educate themselves on all available options. From Ear Community picnics to the Earicles Microtia Atresia Conference in California, and Vanderbilt Microtia and Atresia Clinic in Tennessee, Caroline specifically sought out adults who were BAHS users to speak to. She found that many adults had started with other BAHS’s and eventually switched to the Oticon Medical Ponto. It was these patient interactions and stories that confirmed for Caroline that Dominic needed the Ponto Bone Anchored Hearing System.

Dominic received the Ponto 3 SuperPower and was the first person programmed with a Ponto device at UNC-Chapel Hill. The results since then have been night and day.

“When we take it off, he points at it and he wants it. Then you put it on him and he smiles. Leaving the house is less of a hassle too now. I don’t have to take it off and put it back on him to prevent feedback. When it’s on, it’s on.” – Caroline Mannato

To other parents who are also on the journey of finding the best hearing option for their child, Caroline’s advice is research, because you have options.

 

Find a clinic

Click the button if you want to learn more about our Ponto bone anchored hearing systems or arrange a trial.

A ‘super’ day for Kavya Sharma thanks to Ear Community and Oticon Medical donation

Kavya Sharma is almost two years old and lives in New Delhi, India. She had a difficult start in life, being born with bilateral Microtia and Atresia as well as Hemifacial Microsomia and a hole in her heart. These conditions brought her to the hospital often for feeding tubes and oxygen therapy. Today, Kavya has recovered from many of her health related issues, except one – her ability to hear.

In the Spring of 2017, her mother Savita Sharma, reached out to Ear Community looking for help. With bilateral Microtia and Atresia, Kavya struggled with speech development and couldn’t hear her parents. They worried about her ability to make friends and how she would be able to learn and attend school. After consulting with a specialist in New Delhi, it was suggested that a bone conduction device could be the answer.

On June 5, 2017, Kavya received two brand new Ponto 3 SuperPowers from Oticon Medical that were donated through the Ear Community. With the help and donated time of Dr. Niraj Kumar at the AIMS hospital in Safdarjung, Delhi, India Kavya was fitted and now has the auditory tools she needs to move forward.

“This precious little girl has already struggled to get to where she is, and we are thrilled to be able to help her on her journey.” – Melissa Tumblin, Founder of Ear Community.

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Are you interested in learning more about the Ponto 3 SuperPower for yourself or your child? Click below to be connected to a representative from our team.Learn more

‘We wanted the very best’ – a parent’s perspective on choosing the Ponto Bone Anchored Hearing System

Zhou Yu (“Z”) was born with bilateral microtia and atresia. While living in China he was unaided until he was adopted almost 2 years ago by the Bullock family. His mother Erin began doing research regarding what the best hearing care options would be for Z, knowing he would have progress to make not only learning a new language but hearing for the first time.

“It was not a hard decision to make once we did all the research. The stories that adults and older children were telling were the stories we needed to here. When we demoed products, he even could tell the difference and he picked Ponto” – Erin

In the video below, Erin explains why her family chose Ponto and the difference it is making in her son Z’s life.

Interested in learning more about our newest Ponto – the Ponto 3 SuperPower? Click the button below to be connected to a representative from our team.

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The Power of Conversation with the Ponto 3 SuperPower

Every Ponto user has their own story about their upgrade day and we love hearing about them! The latest comes from one of our advocates, Ross Wiseman, as he shares his experience upgrading to the Ponto 3 SuperPower earlier this week!

Here’s what he had to say:

I upgraded on Wednesday to the Ponto P3SP. It was great having present Lindzee Weeks and Justin Pfeiffer from Oticon Medical along with my Audiologist Lesa Kagan from Wellstar ENT. These are truly “People First” representatives in the world of the hearing impaired.

I waited a couple of days to post because I wanted to test it out in two challenging environments. Wednesday night we had a dinner event at church and the P3SP worked great. Last night I had a meeting with 7 people at a very noisy and packed restaurant. I was seated to the far side of the table with my deaf ear to everyone. In these situations my Ponto Power Plus would do a decent job, but there would be a sense that i needed to focus to really hear what was going on.

Last night I was blown away by the P3SP. During the course of 2.5 hours I completely got lost in the conversation and totally forgot that I was being aided to literally hear everything at the table except for the person directly across from me. The speech recognition was on point and deciphered through all the noise to deliver an experience like I never thought possible again.

I didn’t think Oticon could improve on my last device, but the clarity and naturalness was remarkable. People need to give themselves a chance to try out this device before choosing their solution. Oticon Medical’s products and service are making me a fan for life for sure!

Check out Ross’ video below for a sneak peek of his reaction after hearing with his Ponto 3 Super Power for the first time!

 

Want to learn more about the Ponto 3 SuperPower? Click the button below to be connected to a representative from our team.

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2017 Ear Community Microtia and Atresia Summer Family Picnics

It’s that time of year again when the weather gets warmer and we start making our summer plans! We’re thrilled to once again be sponsors and participants in the Ear Community’s Microtia and Atresia Summer Family Picnics.

Every year, Ear Community hosts picnics all around the world helping bring Microtia and Atresia families together to share experiences and make new friends. Medical professionals such as Microtia and Atresia repair surgeons, anaplastologists, ENT’s, audiologists, and therapists along with hearing device companies all come together at the events to educate and inform attendees of their options. The picnics are free and provide lunch and family friendly activities.

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This year’s picnics will take place in the following locations around the U.S.:

Maryland Ear Community Picnic
Annapolis, Maryland
Date:  Saturday June 10th, 2017
Time:  11AM to 3PM
RSVP to Heidi at:  AnnapolisEarCommunityPicnic@gmail.com

Texas Ear Community Picnic
Austin, Texas

Date:  Saturday, June 10th, 2017
Time:  11AM to 3PM
RSVP to Heidi at:  AustinEarCommunityPicnic@gmail.com

Colorado Ear Community Picnic
Broomfield, Colorado
Date:  Saturday June 24th, 2017
Time:  11AM to 3PM
RSVP to Melissa at:  ColoradoMicrotia@hotmail.com

New York Ear Community Picnic
Ardsley, New York
Date:  Saturday, July 22nd, 2017
Time:  11AM to 3PM
RSVP to Heidi at:  ArdsleyEarCommunityPicnic@gmail.com

Florida Ear Community Picnic
Fort Pierce, Florida
Date:  Saturday, July 22nd, 2017
Time:  11AM to 3PM
RSVP to Heidi at:  FortPierceEarCommunityPicnic@gmail.com

Tennessee Ear Community Picnic
Nashville, Tennessee
Date:  Saturday, July 22nd, 2017
Time:  1PM to 5PM
RSVP to Melissa at:  TennesseeEarCommunityPicnic@gmail.com

We look forward to seeing you there!

5 Tips for getting haircuts with a Bone Anchored Hearing System

Since the time I obtained my Ponto Plus and have posted about it on my social media platforms, I’ve received quite a few questions from new Ponto users about living with a Bone Anchored Hearing System (BAHS). One question that pops up often is how to get a haircut when you have a BAHS.

In my life before my Ponto I never really gave a second thought to visiting a barber shop or salon. But once I had an abutment protruding from the side of my head, I naturally became a little more hesitant when someone was holding a pair of scissors near it.

Here are a few tips I’d like to share based on my experiences and those of fellow BAHS users:

I get a size 1 clipper on the area around my abutment, and it’s never been an issue.

1. Remove your processor – The most important thing to remember is to remove your BAHS before hopping in the barber chair. This immediately helps avoid any potential damage from scissors or clippers.

2. Talk to your barber or stylist – If I’m not familiar with a barber, I always make sure I mention my abutment and explain what it is so they understand what they’re working with. Here’s what I tell them:

  • The piece is not at all fragile, as it is a part of my head
  • Don’t use clippers under the attachment
  • Don’t attempt to shave or brush over the abutment with clippers, trimmers, or brushes and combs

 

3. If you dye your hair – Sandi, who dyes her hair advises paying extra attention to cleaning the area around the abutment as any residual dye can cause an infection.

 

 

 

 

4. If you have long hair – Those with longer hair, like Aly, typically just need to make sure that their stylist is aware of the abutment, and to instruct them not to brush over the site.

 

 

 

 

5. Heal up first – If your abutment is new, you’ll want to hold off on getting your haircut until the site is fully healed to avoid complications. Better safe than sorry!

And that’s all it takes! A little awareness goes a long way and the results are great! 

What’s your experience been like at the salon? Share your story with me now on Twitter or Instagram!

Want to know more? Click the link below to learn more about the Ponto family of processors!

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About the author

After attending Oticon Medical’s patient advocacy event in 2016, I knew I wanted to take action on my advocacy in a new way. I am in awe of the work that Oticon Medical does, and even more so excited by the ways in which the work is done. I’ve always been very adept in social networking and media and knew I wanted to use my skill set in a professional, progressive and communal environment.

The Gift of Hearing Travels to Africa

We’d like to introduce you to someone very special!

Meet Raheeg Abdelrahman, a four-year-old girl living in Sudan with her younger twin siblings, her mother, and her father, Eltahir.

Raheeg was born with bilateral Microtia and Atresia, and when her family couldn’t find a suitable hearing device in Sudan, they traveled to Egypt to meet with an audiologist who they hoped could help them find a solution. Unfortunately, the family was unable to find an affordable solution and were forced to return home without a device for Raheeg.

That’s when we heard about Raheeg and her family through our friends at the Ear Community and partnered with them to provide two Oticon Medical Ponto Plus hearing devices for her.

The devices were sent to Egypt where Raheeg was fitted with her devices with great results:

 “She can answer our call easily and surely this will help her to receive her lessons like other kids…it is difficult to get words to express my thanks but I say God bless you!

Please convey my deepest heartfelt thanks and appreciation to all of Oticon Medical staff for the help and support they provide to everybody in our Ear Community, and special thanks for Mr. Alan Raffauf, Tove Rosenbom, and Claus Frees Horneman…THANKS to YOU dear friends for giving me hope that my daughter can go to school, hearing sounds and practice her life like other kids.  Thank you for making my impossible dream become real!”

– Eltahir Abdelrahman

We’re honored to have had the opportunity to help provide the gift of hearing to another individual with hearing loss and are thankful for our friends at the Ear Community for sharing Raheeg’s story with us!

If you’d like to learn more about Raheeg and Microtia and Atresia, the Ear Community blog is a great resource!

What’s the Ponto 3? This Video Explains

The Ponto 3 is the world’s most powerful family of abutment-level sound processors. Powered by the advanced sound processing Inium Sense chip and supported by Direct Sound Transmission, the Ponto 3 makes listening in different situations easier.

Sound is sent straight to the bone, and on to the inner ear and the brain, without it having to travel through the skin which dampens sound.

But that’s not all. The Ponto 3 is also as discreet and reliable as it is powerful.

Watch this short video for a more detailed look at the Ponto 3.

If you’re interested in taking the next step in your hearing care journey to get the best sound quality possible, sign up to learn more about the Ponto 3.

Learn More