Archives for February 2017

Mazie receives the gift of hearing thanks to Cochlear Americas and the Ear Community Organization

Mazie Herzing of Richmond, Virginia receives a newly donated Cochlear Americas Baha 5 through the Ear Community Organization on February 16, 2017.

Ear Community is proud to introduce Mazie Herzing, our newest Baha recipient!  She was born last July and diagnosed with Microtia and Atresia of her right ear and Hemifacial Microsomia.  She lives with her big sister, twin brother, and parents Carly and Shelley in Richmond, Virginia, USA.  When Mazie was first diagnosed, her parents were told that she would never have hearing on her right side.  Carly and Shelley went for a second opinion and that was when they were informed about a Baha as a possible way to help little Mazie hear “surround sound.”  Like most parents, Mazie’s moms had worried about the inability for Mazie to access to auditory information.  With Microtia and Atresia being so rare, getting all of the correct information can be hard to come by, so three cheers for Mazie’s parents for looking deeper for solutions that taught them more than they would ever imagine!  While Mazie’s parents were doing their research, Carly’s sister, Amanda Bray (Mazie’s Aunt), was also learning more about Microtia and Atresia and thankfully found the Ear Community Organization.

On February 16th, 2017, the Ear Community Organization was given the opportunity to donate a brand new Cochlear Americas Baha 5 to little Mazie to help her hear better!  When Mazie’s moms anticipated the day of the fitting, the happiness and excitement built even more.  And when Mazie turned her head to Shelley that first time, when listening through her Baha, their hearts exploded with a million and one emotions they could never even explain.”  Mazie’s moms said, “Thank you for helping us give hearing to our littlest one” when they were leaving the audiologists office, Shelley was talking on Mazie’s Microtia side, and she turned her head and smiled which was the first time she had done that!  Mazie is a “brave, tenacious, and stubborn little girl” and Ear Community is thrilled to give her the opportunity to hear through both ears!  Mazie’s big sister said to her, “You can hear out of your baby ear!  You make me so happy!”  This is a great thing for their whole family!

Carly’s sister, Amanda Bray, said, “I truly do not think we can put into words how much this has meant to us. When my sister and Shelley found out about the approval for Mazie to obtain a Baha through Ear Community, I truly do not think they have experienced a happier moment in their entire lives.  Amanda said “I would like to personally thank Ear Community for “hearing” my sister’s story and considering our family for this incredible gift. Your clear commitment to helping the “community” find answers to some of parents and families most difficult questions about these beautiful little miracles is nothing short of amazing.  I hope you know how much you have touched our lives, and I am certain the lives of many, many others. What you have built is incredible on so many levels.

Ear Community would like to say thank you to Meredith Heiner, Au.D., CCC-A at the VCU Health Systems Audiology Department for donating her time to fit and program Mazie’s Baha 5.  Ear Community would like to express a special thank you to Nancy Klein of Cochlear Americas for releasing Mazie’s donated Baha 5 and making sure it made it’s way to Dr. Heiner’s office for Mazie’s fitting.  Mazie would not be able to hear better today if it were not for wonderful corporations like Cochlear Americas who make amazing hearing technology.   From all of us, thank you for helping Mazie hear better!  “Cochlear is the global leader in implantable hearing solutions. It has a dedicated global team of more than 2,500 people who deliver the gift of sound to those with hearing loss in over 100 countries. Its vision is to connect people, young and old, to a world of sound by offering life enhancing hearing solutions. In 2013, Cochlear celebrates 100,000 Baha System users – all with unique stories of how being able to hear again has impacted their lives. The Cochlear promise of “Hear Now. And Always” embodies the company’s commitment to providing its recipients with the best possible hearing performance today and for the rest of their lives.”

We are all so happy that Mazie can hear so much better now and for knowing how bright her future will be from here on out.  We’re also very proud of Mazie’s family for doing their research and finding help through the Ear Community Organization for Mazie and for themselves, as a family.

Mazie, we wish you the best of everything that this world has to offer, and look forward to watching the great impact you’ll have!

Ear Community Organization
www.EarCommunity.org

2017 Ear Community Microtia and Atresia Summer Family Picnics

2017 Ear Community Microtia and Atresia Summer Family Picnics

Ear Community hosts picnics every year around the world helping bring Microtia and Atresia families together.  This year’s picnics will take place in the United States in Annapolis, Maryland/ Austin, Texas/ Broomfield, Colorado/ Nashville, Tennessee/ Ardsley, New York/ and Fort Pierce, Florida!  It is very exciting for many families! Everyone enjoys attending our picnics and our Ear Community picnics always offer such a wonderful opportunity for Microtia and Atresia families to come together, share experiences with each other, and maybe even make a new friend.  Medical professionals such as world renown Microtia and Atresia repair surgeons, anaplastologists, ENTs, audiologists, and therapists along with the world’s leading hearing device and medical device companies all come together to mingle with us at our picnics, helping educate us on all of our options including hearing loss.

We look forward to seeing you at our Ear Community picnics this year!

Melissa Tumblin,
Founder and Executive Director of Ear Community
Founder of the Microtia and Atresia Support Group on Facebook

2017 Ear Community Picnics

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

Vanderbilt University and Children's Hospital

Vanderbilt University and Children’s Hospital

*  This Ear Community picnic will be in collaboration with a FREE surgeon conference that will take place at Vanderbilt University Medical Center.  This conference is a wonderful opportunity to learn about all of your options for Microtia and Atresia and again…it is FREE to Microtia and Atresia families as Vanderbilt University and Children’s Hospital is a nonprofit organization.
Our collaborative event will begin at 8:30AM – 5:00PM with educational presentations by:

– Ron Eavey MD SM Director, Professor and Chair for Research and Causes of Congenital Ear Malformation, Vanderbilt
– Scott Stephan MD Facial Plastic Reconstructive Surgery Medpor, Vanderbilt
– Sivakumar Chinnadurai MD MPH Pediatric Otolaryngology Rig Graft, Vanderbilt
– Alejandro Rivas MD Neuro-otology Hearing Restoration in Aural Atresia, Vanderbilt
– Margaret McRedmond Au.D. CCC-A Audiology, Vanderbilt
– Scott Fiscus B.C.O.,  Anaplastology Ear Prosthesis, Nashville, TN
– Parent Panel
*  A delicious lunch will be provided as we kick off our Ear Community picnic along with a face painter, balloon artist, and magician.  We look forward to seeing everyone at our event.  A special thank you to Vanderbilt Medical Center and Dr. Ron Eavey for making this event possible with Ear Community.  Please join us for an amazing day!

National Microtia Awareness Day Ribbon for Ear Community Organization – November 9th, 2017.

 

Annual National Microtia Awareness Day
Throughout the United States and anywhere wishing to celebrate with all of us!
November 9th, 2017
To hear all about our amazing first National Microtia Awareness Day, please click here
Click here for our press release…
Click here for an interview with AudiologyOnline about National Microtia Awareness Day…
Click here for our radio commercial for raising awareness about Microtia and Atresia…
Coming soon….click (here) anytime during the year to order official National Microtia Awareness t-shirts…
THANK YOU TO EVERYONE WHO CELEBRATED OUR FIRST NATIONAL MICROTIA AWARENESS DAY ON NOVEMBER 9TH, 2016, WITH ALL OF US HERE AT THE EAR COMMUNITY ORGANIZATION IN THE UNITED STATES, INCLUDING ALL WHO ALSO CELEBRATED WITH US IN OTHER COUNTRIES ALL OVER THE WORLD!!!  This day was SO amazing and so very special to so many of us, everywhere!

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Austin, Texas (USA)
June 10th, 2017

On Saturday, June 10th, 2017 Ear Community hosted its other first Microtia and Atresia family picnic in sunny Austin, Texas.  This was our fourth Ear Community picnic hosted in the great state of Texas since 2012! Our picnic hosts were Misty, Josh, and Aubrey Haver. Misty drove an hour out of her way every time she scouted picnic locations in order to find the perfect park location for our Austin picnic (Misty and her family do not live in Austin, but just outside of the city).  Misty worked tirelessly to make sure it was a very special and fun day for the families that attended. Misty and her husband, Josh, found Ear Community after their daughter, Aubrey was born with Microtia and Atresia.  Since 2013, Misty learned all that she could regarding options for Microtia and Atresi through Ear Community’s website and our support groups.  Since then, her daughter Aubrey has had both Medpor surgery for a big girl ear and canalplasty so she can hear better!  Misty has become a wonderful friend to Melissa Tumblin, Ear Community’s founder, over the years and both Misty’s daughter, Aubrey, and Melissa’s daughter, Ally resemble each other.  The two moms have enjoyed talking about their beautiful daughters over the years and are so proud of the beautiful and confident little girls they are becoming.

We had about 160 people join us on our special day. We had families attend from Texas, Colorado, and Wyoming just to name a few.  The kids had a wonderful time getting their faces and arms painted as well as playing with some fun balloon art! We also had a magician who entertained the kids and made them laugh. Misty had brought some extra fun things for the kids to play with, like a swimming pool full of bubbles for them to blow bubbles with.  Families were able to mingle with each other and share their experiences and let the kids play with each other.  With Ear Community’s funds for our picnic, Misty helped make our day by ordering two super cute cakes that said, “Microtia Kids Rock” on them for the families to enjoy.  We also had one of our attendees, Jamela Reifsnyder, who is a classically trained soprano who tried on hearing devices and sang with her beautiful voice so she could get the full affect of trying on a bone anchored hearing system.

Families who attended our picnic were able to learn about all of their options for Microtia and Atresia from the leaders in the medical community (thank you to Dell Children’s Hospital plastic surgery center for being a part of our special day and educating families about options for Microtia and Atresia). Everyone who attended was given the opportunity to try on the latest in bone anchored hearing devices from Cochlear Americas, Medtronic, and Oticon Medical. Thank you to Stryker CMF for helping educate families about Medpor and also to Poriferous, LLC for educating about Su-Por.  We also had Colette Shrader, an anaplastologist from Personalized Prosthetics, join us to help families learn more about prosthetic ears.   Thank you to James Hermsen from Spokiez glasses for helping educate families about his amazing eyewear for children who do not have ears.  Thank you also to Eleshea Martin of Baha Headbands for bringing some give-a-ways for families at our picnic.  Thank you to everyone for coming and supporting Ear Community and for sharing your experiences with all of us and knowing that you are not alone!

We would like to say a very special thank you to our sponsors because without their support, Ear Community would not be able to host our wonderful picnics for all of these beautiful Microtia and Atresia families.  Thank you to Cochlear Americas, our Platinum Sponsor!  Thank you to Oticon Medical, our Gold Sponsor!  Thank you to Medtronic, our Silver Sponsor!  Thank you to Stryker CMF (Medpor) and Poriferous, LLC. (Su-Por) for helping make our special day possible and a little more fun for everyone!  Thank you to Kevin Goldstein of Far End Gear for donating the One Good Ear Buds so individuals who have one ear do not have to tie off or cut off the second cord that most ear buds have!  hat were donated to Ear Community and given away to families at our picnic. Thank you to the medical professionals who attended and educated us on our special day and help everyone learn about the facts.  Thank you to Misty Haver for donating a couple of stuffed Nemo’s for the kids at our picnic and thank you to Heidi Jeffs (Events Manager for Ear Community) for donating two books from Usborne books to some lucky kiddos to help keep their reading skills up during the summer break!

A very special thank you to our picnic hosts Misty, Josh, and Aubrey Haver for hosting our Ear Community picnic. Misty worked so so hard to make this picnic one to remember. Thank you for doing so much and for helping give back to these families in your community in Austin, with the Ear Community Organization.  Misty is one of our “Moms on a mission” and she has gone above and beyond every time when helping Ear Community and the families in her area.  We are so grateful to have you as a part of our community, Misty.

Here are some fun memories from our Austin, TX Ear Community picnic:

Annapolis, Maryland
June 10th, 2017

 

On Saturday, June 10th, Ear Community hosted it’s second Microtia and Atresia family picnic in the state of Maryland.  Our picnic took place in Annapolis where nearly 200 people joined us on a beautiful sunny day with their families.  Kevin and Katie McKay, with their children Olivia and Reese, hosted our beautiful picnic.  The McKay family have been members of the Ear Community Organization since 2012 and have become wonderful friends to Melissa Tumblin, Ear Community’s founder.  Sometimes, life throws some unexpected curve balls in our lives…  In support of Kevin McKay, the Tumblin Family wore their #KevinStrong t-shirts to support Kevin in his fight against brain cancer.  The McKay family is truly amazing and an inspiration to Melissa and her family as Kevin had his second brain surgery just one and a half weeks out from our picnic day taking place and Kevin still wanted to host our special day along with his family for the Ear Community Organization.  Kevin spoke about how much Ear Community means to him and to his wife, Katie.  Katie is thankful for finding Ear Community because our organization helped her deal with postpartum depression when her daughter was born with Microtia and Atresia.  Today, the family knows about all of their options and little Olivia is a confident little girl who is happy with her little ear.  Thank you to the  McKay family for all of their hard work helping make sure our special day took place and for doing all of this for the Ear Community Organization even while supporting Kevin in his fight against cancer and organizing fund raisers for the Race for the Cure and 5k walk/runs that Katie, Kevin’s wife, organized to support her husband.  Thank you for showing all of us the meaning of life and to enjoy every day to its fullest.  We will continue to pray for You, Kevin, and your family.  We are forever grateful for your family to be a part of our special day in Maryland.

Melissa Tumblin and her family (husband – Brent, and daughters, Hailey and Ally) attended our Annapolis picnic enjoying meeting the many families that they get to know and help through the organization’s online support groups, e-mail, and over the phone.  Families joined us on our special day from many surrounding states including Maryland, Ohio, Pennsylvania, Colorado, Virginia and West Virginia just to name a few. The kids had a wonderful time getting their faces painted and interacting with the magician! Families mingled with each other and shared their experiences and let the kids play with each other.  This was a special day for our children, a day where there were no stares and everyone looked the same because we are all in the same situation with Microtia and Atresia.  There were lots of families who attended our Maryland picnic too who enjoy traveling to our other Ear Community picnics.  Thank you for the amazing support from all of these families and it is always great to see smiling and familiar faces at the picnics the Tumblin family attend.

Families who attended our picnic learned about all their options for Microtia and Atresia through the organization.  Everyone who attended was given the opportunity to try on the latest in bone anchored hearing devices from Cochlear Americas, Medtronic, and Oticon Medical.  Families were given the opportunity to learn more about Medpor, thanks to Stryker CMF and Su-Por, thanks to Poriferous, LLC.  Dr. Angelo Leto Barone and Dr. Maria Chicco from Johns Hopkins also joined us on behalf of the plastic surgery center at Johns Hopkins for Microtia and Atresia.  Families at our Maryland picnic were also given the unique opportunity to learn about a newly devised product that Dr. Angelo Leto Barone has been working on to help shape consistent looking rib graft ears that was created by his company he co-founded called Auryzon (part of ReconstratA).  We also had Spokiz eyewear on site offering eye glasses that can be worn over the head for children who do not have ears.  Thank you to Kevin Goldstein of Far End Gear for donating free One Good Ear Buds at our picnic so families with one ear can enjoy listening to music with one ear and not have to tie off the second ear bud.  Thank you to Jim McGlone and his wife Sheila and also Dr. Pamela Foulds for attending our Maryland picnic.  Jim and Dr. Foulds work for a biomedical company that specializes in 3D printing and stem cell technology research.

During our Annapolis Ear Community picnic, Melissa Tumblin made some very exciting announcements about what the organization is working on.  Melissa Tumblin announced the collaborative work she is involved with regarding a genetic study that is being worked on with Harvard University and Vanderbilt University thanks to Dr. Roland Eavey and Dr. Jonathan Seidman (the first two doctors to publish a paper about the first Microtia gene over 20 years ago).  Families who attended the picnic were given the opportunity to sign up for the genetics study.  Also, in celebrating our 2nd Annual National Microtia Awareness Day for Ear Community, Melissa announced that the organization now has Microtia awareness items (such as ribbons and jewelry) to help raise awareness about Microtia and Atresia and as a fund raiser to the organization.  Ear Community’s awareness items were very popular at the picnic and we are excited to see everyone wear them on our National Microtia Awareness Day this November 9th!   We also announced some of Ear Community Organization’s Baha recipients who have been awarded a new hearing device thanks to the help of Cochlear Americas and Oticon Medical.

We would like to thank Cochlear Americas for being our Premium Platinum Sponsor for this year’s Ear Community Microtia and Atresia picnics!  A special thank you to  Oticon Medical for being our organization’s Gold Sponsor and to Medtronic for being our organization’s Silver Sponsor!  Thank you to Stryker CMF (Medpor) and Poriferous, LLC (Su-Por) for also helping make our picnic day so special and fun for all of these beautiful families!   Thank you to the medical professionals who could be with us on our special day and help everyone learn about the facts about Microtia and Atresia.  Thank you to our sponsors who donated lots of giveaway items (super hero capes, bubbles, stuffed animals, soft band head bands, hearing aid drying kits, and more)!  Thank you to Heidi Jeffs (Events Manager for Ear Community) for raising money to donate some great children’s books for the kids at our picnic through Usborne books!

A very special thank you again to the McKay Family for hosting our Annapolis, Maryland picnic!  Katie McKay….I know you were the driving force behind getting all of this done for these families and all of us will forever be thankful for our special day that You and Kevin and the kids helped bring together and give back to in your community on June 10th!  Thank you for all that you do for the Ear Community Organization and for the support you give to Ear Community to help our nonprofit continue going to help other Microtia and Atresia families!  We are thankful more than you will ever know!

Here are some fun memories from our Annapolis, MD Ear Community picnic:

Broomfield, Colorado
June 24th, 2017

Our 6th Annual Colorado Ear Community Microtia and Atresia Picnic took place in Broomfield, CO on a beautiful, sunny day on Saturday, June 24th.  Families commented on how beautiful the view was of the Boulder Flatirons and foothills on the drive to our beautiful park location in Broomfield.  Our head quarter picnic was hosted by Audra, Illiana, and Lorenzo Molina and Melissa, Brent, Hailey, and Alyssa Tumblin.  This was the second year that the Molina family helped the Tumblin family co-host our picnic.  The Molina’s daughter, Illiana, was able to meet Dr. Sheryl Lewin at our Ear Community picnic held three years ago and since then, Illiana has two beautiful Medpor ears and is aided with the Cochlear Baha 5 Attract hearing device.  The Molina’s have come a long way since discovering Ear Community and the help that the organization can provide.  Illiana also goes to the same elementary school that Alyssa Tumblin goes to and the two girls have since become friends.  Heidi Jeffs and Kristen Hale (Ear Community Board of Director members) joined us at our picnic in Colorado.  We also had some Ear Community hearing device recipients join us at our picnic.  This picnic has brought together more families who have become friends, including the friendship that has developed between the Molina and Tumblin families.

We had about 250 people RSVP for an incredibly fun day.  We had families join us from Colorado, Idaho, Virginia, Wyoming, North Dakota, and New Mexico.  The kids hula hooped, played catch with Nerf footballs, and enjoyed getting their faces painted and sported some amazing balloon art!  Magic Rob put on a great magic show for the kids and the kids got to pet the magic bunny too!   Magic Rob has been our magician for the past few years and he also has hearing loss…so, he is the perfect magician for us!  Chick-fil-A provided a delicious lunch once again for all of us to enjoy.  The Chick-fil-A cow also joined us and handed out mini moos to each child and helped play corn hole with families.

We had some special moments take place at our picnic in Colorado this year.  The Karate studio, The Dojo of Karate, came and performed some really great forms and other exercises using nunchucks and got to participate in a mini-class where they learned how to block, punch, kick and jump-kick!  It was a great time all around.  Ear Community was also able to roll out some exciting products that support Microtia and Atresia Awareness.  We had car decals and ribbon pendants that were hand made by Elizabeth Bunting who has a granddaughter who was born with Microtia and Atresia.  Elizabeth not only makes many of the same lapel brooches and car decals for other nonprofit organization such as the American Pancreatic Association and the Lupus Foundation and some of the NFL teams, but she also puts the bling into the Dallas Cowboy cheerleader uniforms (the same bling that is in our awareness ribbons).  So, we were happy to keep it in the family on those products and her daughter and granddaughter are members of our Ear Community Organization too!  We also had some beautiful hand-made bracelets that are made by Ear Community’s founder, Melissa Tumblin, that have adorable ear charms on them, and the official “Microtia blue” in Swarovski crystal.  There were three different styles to choose from, and many of the families couldn’t wait to get some for themselves and loved ones.

A very special thank you to our amazing sponsors!  Without our sponsors, we would not be able to have our amazing picnics!  Thank you to our Platinum Sponsor- Cochlear Americas, our Gold Sponsor – Oticon Medical, and our Silver Sponsor – Medtronic.  Thank you also to Stryker CMF (Medpor) and Poriferous, LLC. (Su-Por) for helping make our day special too!  Thank you for helping educate families on how they can help their loved ones with hearing loss through the use of a Baha 5, Ponto 3 Superpower, and Alpha MDO.  Thank you Oticon Medical for raffling off three of your amazing gift baskets that featured Massie the bear stuffed monkey who wears the Ponto!  Our winners of Massie bears just loved them!  A special thank you to Stryker CMF for helping educate families about Medpor!  We also had some eye glass samples from Spokiz too that are made for kids without ears.

Thank you to Kevin Goldstein of Far End Gear for donating 165 single ear buds for families to have.  Thank you to Jeremy Martin at Eldorado Springs for donating (6) five gallon bottles of natural Colorado spring water with hand pumps for all of us to enjoy at our picnic and so no one would go thirsty!    Thank you to Patrick and Carter at the Costco in Thornton, CO for donating gift cards that we used toward the purchase of juice boxes for the kids at our picnic.  Thank you also to Lyndsie Strange of The Fox Wears Camo for joining us at our picnic and donating some cute shirts!  Thank you to Heidi Jeffs for donating 4 children’s books that she raised through book club!

As always, it is always so nice to see so many family faces that have been helped by Ear Community over the years.  Can’t wait to see everyone again soon at our next picnic.

Here are some special memories from our special day!

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