Archives for November 2019

November 9th is National Microtia Awareness Day!
Microtia is a congenital birth defect that occurs when one or both ears do not fully develop or are physically missing. Microtia is often accompanied by Aural Atresia – when the ear canals are underdeveloped or absent, resulting in hearing loss. Many children have associated craniofacial challenges, known as craniofacial microsomia, which affect the symmetry of the jawline causing oral challenges and a slight crooked smile. In the United States, Microtia and Aural Atresia affect 1 in every 6,000 births which is approximately 663 babies born each year. There are an estimated 54,000 individuals currently living in the United States with Microtia and Atresia.  The numbers of individuals affected by Microtia and Atresia vary regionally from country to country. While African Americans seem to be the least affected, Native American, Asian, Ecuadorian, Columbian, and Latino-Hispanic ethnicities are often affected more so. While it is not yet understood what causes Microtia and Atresia, it is possible that it is genetic. Microtia and Aural Atresia occurs during the 1st trimester of pregnancy when the ears develop.

National Microtia Awareness Day is a day that is dedicated to raising awareness and spreading knowledge. Even though this is a nationally recognized awareness day, many countries embrace our day as well. Through this national day, many can come together and find out about organizations & resources for information & support. On this awareness day, families raise awareness alongside teachers of the Deaf and Hard of Hearing with speech therapists at schools, helping talk about hearing loss and teach kindness. Many read books that have been created to share stories about children with missing ears like the book Wonder and Chelsea and Her Little Ear Make a New Friend. Medical professionals including ENTs, plastic surgeons, audiologists, and pediatricians open their doors to host educational clinics for families. Hearing loss organizations & hearing device/medical device companies all raise awareness & help educate about Microtia and Atresia by blogging and tweeting on social media platforms, by offering educational accredited courses about Microtia and Atresia and by helping sponsor organized events.

An elementary school in Colorado embracing National Microtia Awareness Day

It is Ear Community’s hope that families who have new babies born with Microtia and Atresia will leave the hospital armed with more answers than questions & their dreams for their children intact. If more people learn about Microtia & Atresia, they will be kinder & more accepting. It is also our goal for children & adults with Microtia and Atresia to realize that they are not alone. Facial challenges, hearing loss and the longing for social acceptance are some of the daily concerns for those who are born with Microtia. Children are born into this world not knowing they are any different from anyone else. Many with Microtia share similar stories of curious stares, bullying, or awkwardness. Individual personalities, social conditioning, available treatments and bullying all impact how every child develops and copes as an adult. By removing unnecessary boundaries and replacing them with resources, tools, and support, we can eliminate bullying and clear the way for an even more successful future.

The Tumblin Family, 2019 NMAD

The Tumblin family founded the Ear Community Organization after their youngest daughter was born with Microtia and Atresia of her right ear in 2009. The Tumblin family also established National Microtia Awareness Day to embrace Microtia and Atresia families, everywhere. Since 2010, the Ear Community Organization has brought over 15,000 people together from around the world at the organization’s events making it possible to share experiences and resources, donated over 120 hearing devices and has awarded 12 college scholarships. The community is made up of not only children and adults with Microtia and their families, but teachers, advocates, and medical professionals from all over who foster awareness and assistance for this amazing group of people. Board members for Ear Community either have the condition themselves or a family member who does, so they have close personal experience with the obstacles from a myriad of perspectives. The organization also has an advisory board made up of medical professionals who have chosen to focus their skills on helping improve the quality of life for individuals who have Microtia and Atresia.

Some of the advocacy and awareness the Ear Community Organization has set out to promote and achieve in addition to helping families and their children find acceptance is working toward finding answers as to why

Harvard Seidman Labs, Angela Tai and Barbara McDonough, Team Microtia

Microtia and Atresia occur. The organization is hopeful in finding the gene or genes in common that cause Microtia and Atresia and is on a grant with Harvard and MIT and the Broad Institute. The organization has also been working very hard at advocating for hearing device insurance coverage for bone conduction hearing devices, the only hearing devices individuals with Microtia and Atresia can wear. These very hearing devices are often not covered by private insurance providers and the organization is hopeful that by trying to mandate insurance coverage someday will become a reality for the individuals in our community. Ear Community has been advocating

Congressman McKinley’s office tweeted about National Microtia Awareness Day

on Capitol Hill in Washington, DC with with Congressmen David McKinley, Mike Thompson and Joe Neguse since February of 2019. This November 9th, we were honored to see that Congressman McKinley’s office and staff tweeted about our national awareness day spreading awareness on our special day for our community!

Each year, National Microtia Awareness Day is becoming more recognized! This year, we had (10) medical facilities host organized Microtia and Atresia clinics on or near our day to help educate these families on all of their options and to bring them together throughout the US and in other countries. Some of the clinics organized were at Stanford, Vanderbilt, and many of the Children’s hospitals including Seattle, Texas and Pittsburgh and many audiology clinics along with NYEE Infirmary and MEEI. Johns Hopkins offered a grand rounds course on rib cartilage carving workshop, honoring National Microtia Awareness Day.

An American Flag was flown over the US Capitol in Washington DC on National Microtia Awareness Day

We had clinics organized in Chile and Columbia as well, including many microtia and atresia repair surgeons spreading awareness and educating online leading up to our day. There were many organized events held all over the world from meetings to parent/teacher organized events that brought Microtia and Atresia families together throughout the US and in Australia, Canada, Mexico, Poland, Costa Rica, Argentina, Columbia, Mexico, Ireland, Chile, Denmark, Malaysia and so many more! Below are some of our memories from our National Microtia Awareness Day for 2019:

A very special thank you to all of Ear Community’s amazing sponsors who helped make our awareness day extra special for everyone! Our sponsors went the extra mile to put together beautiful memories for all us from videos educating about Microtia and Atresia to special events that were organized at their offices with treats and cupcakes in our awareness blue and educational blog posts on social media about the helpful options their companies offer that help give our loves ones the best quality of life. From hearing devices to medical device implants to prosthetic ears, thank you for all that you do to help our children and adults hear better and feel whole again!

Thank you to our Platinum Sponsors!
Cochlear Americas (Baha 5 models and accessories)
Oticon Medical (Ponto 4 models and accessories)

Thank you to our Silver Sponsors!
Stryker (Medpor)
Med-EL (ADHEAR and Bonebridge)

Thank you to all of the medical facilities throughout the US & in other countries that hosted Microtia & Atresia clinics on or around November 9th this year. A special thank you to all of the parents and advocates and teachers of the deaf & school who organized events that took place again this year, making it a special day for their loved ones who have Microtia and Atresia! We are overwhelmed with tears of joy and happiness from so many of our FB and Instagram friends who posted, blogged and tweeted about our awareness day, wearing our shirts and blue awareness color and changing their profile pictures over to our awareness ribbon. We had hundreds of pictures pour in from our FB and Instagram accounts of beautiful children and adults and their families wanting to show off their beautiful smiles and sweet little ears. To view many of these photos, please go to our support group pages on FB for the Microtia and Atresia Support Group and our Ear Community page. Thank you to Heidi Jeffs (Ear Community events manager) who requested that an American flag fly over the US Capitol in Washington, DC on November 9th for our national awareness day! This year, was also fun with our Instagram count down (thanks to board member Rachel Songy) and seeing so many families having fun with counting down to our National Microtia Awareness Day! Our community’s hearts are full today!

Remember, kindness goes a long way!
Everyone at the Ear Community Organization
www.EarCommunity.org

We also had a lot of fun videos made too!
– Microtia Columbia video: https://www.facebook.com/microtiacolombia/videos/446555226243825/UzpfSTY3NzA2Mjc0NzoxMDE1NzcxODA2NjQzNzc0OA/
– Cochlear Americas video: https://www.facebook.com/Cochlear/videos/2478674095687301/
– Oticon Medical video: https://www.facebook.com/OticonMedical/videos/514096739187119/UzpfSTY3NzA2Mjc0NzoxMDE1NzcxNjY3MzU1Mjc0OA/
– Oticon Medical video: https://www.facebook.com/OticonMedical/videos/485423735516891/UzpfSTY3NzA2Mjc0NzozMDYwNjExMjk0OTk0MTQ6MTA6MDoxNTc1MTg3MTk5OjE0OTQ4Mzc4OTY4MDA4MDY0NA/
– Stryker website: https://cmf.stryker.com/national-microtia-awareness-day
– Medel’s FB page: https://www.facebook.com/medel.unitedstates/videos/416267809089898/

On Saturday, September 21st, 2019, the Ear Community Organization and it’s Founder, Melissa Tumblin, were 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.

There’s some serious power behind female patient advocates and is a topic that @lizpresson is speaking to more at @stanfordmedx #MedX that took place on Saturday, Sept. 21st from 2:05 – 2:25 PM PT. Liz will be sharing the stories of amazing women who are evolving the traditional healthcare system like Melissa Tumblin, Founder of @earcommunity, and Amy Edgar, Founder of Children’s Integrated Center for Success.

The title of the presentation is:
“The Power of Female Patient Advocates: Voices of women who are being heard and evolving healthcare on their own terms.”

A recorded link will become available soon. The following is the link for “live” streaming:  https://livestream.com/stanfordmedicinex/events/8808087

Liz Presson, Founder and CEO of Pursuit

A special thank you to Liz Presson!
This is an absolute honor!
– Ear Community
www.EarCommunity.org

How do you see healthcare working better for and with women? You can watch the live stream on Saturday. (Link in bio.) 📸