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New clinic focuses on patients with rare ear malformations

July 6, 2017 By Leave a Comment

Members of the new clinic for patients with microtia and aural atresia include (front row, from left) Brittney Baugh, Sharon Johnson, R.N., Margaret McRedmond, Au.D., (back row, from left) Ron Eavey, M.D., Scott Fiscus, BCO, Scott Stephan, M.D., Sivakumar Chinnadurai, M.D., and Alejandro Rivas, M.D. (photo by Anne Rayner)

by Matt Batcheldor | Thursday, Jun. 8, 2017, 10:16 AM

Having a child born without an external ear or ear canal can be a scary and confusing experience for parents, and finding medical care for the rare condition has meant having to travel to several distant medical centers for treatment options.

But now the Vanderbilt Bill Wilkerson Center has launched a multidisciplinary clinic for patients with microtia and aural atresia, enabling families to meet with the Vanderbilt clinicians who provide all treatment options for the condition under one roof, on one day. The clinic experience is coordinated by Brittney Baugh and assisted by Sharon Stringer Johnson, R.N.

Microtia and aural atresia are rare, yet highly visible, congenital malformations of the outer and middle ear that affect about one in 7,000 to 10,000 children. Those with the condition can have little or no external ear and no ear canal formed.

“The malformation on the outer ear can come in many forms, from a slightly misshapen top of the ear to the complete absence of any cartilage or skin, with perhaps just an ear lobe present,” said Scott Stephan, M.D., assistant professor of Otolaryngology.

“The ear canal can go from having no opening whatsoever to having a little opening or even having a very tiny ear canal that still is not good enough to transmit sound to the hearing organ, which is in the inner ear,” said Alejandro Rivas, M.D., associate professor of Otolaryngology and Neurological Surgery.

One external ear reconstruction treatment is to recreate the outer ear out of the patient’s own rib cartilage, which is offered by Sivakumar Chinnadurai, M.D., associate professor of Otolaryngology. Another method is soft tissue reconstruction, such as that offered by Ron Eavey, M.D., Guy M. Maness Professor and chair of Otolaryngology and director of the Vanderbilt Bill Wilkerson Center. A newer technique, using an ear-shaped implant covered by the patient’s own tissue, is offered by Stephan. And cutting-edge prosthetics are offered in partnership with Scott Fiscus, BCO, at Precision Ocular Prosthetics in Nashville.

Ear reconstruction — as shown in the before and after photos above — is one of the treatment options available at Vanderbilt’s new clinic for patients with microtia and aural atresia.

Rivas is available to consult on surgical options for hearing restoration in patients with aural atresia, including atresia repair and other implantable technology. Together with audiologist Margaret McRedmond, Au.D., they work hand in hand assisting patients with hearing solutions and devices.

“This interdisciplinary clinic allows me to meet families that may be coming in for reconstructive reasons but I can educate them about how we might be able to help their child hear better too,” McRedmond said.

Added Chinnadurai, “Microtia and atresia are complex and sometimes daunting problems for new parents. It is important for families to get connected early on to understand that they have many excellent options to help their children and we strive to be a resource for families to be able to make the best decision for their child and family.”

In addition to treatment options, Vanderbilt is working to create a community for families of patients with the rare condition by hosting a yearly patient/family oriented conference and picnic, such as the one held last summer.

“The nice thing about that is that there is a good interaction between families,” Rivas said. “When you meet the families of these patients, they all want to know what are the differences and kind of have a personal view of how their cases went and what to expect. In a way, it’s a different way to be able to teach them and orient them on what is the right decision for their children.”

Stephan said the clinic tries to help children as early as possible, for several reasons.
“Children with microtia and atresia have to cope with both hearing impairment in the early years of language development, as well as the social and psychological impact of a congenital malformation that makes them different from their peers.”

Melissa Tumblin is excited about the new clinic. Tumblin founded earcommunity.org, a website devoted to helping individuals who were born with microtia and atresia, and is a consultant for VUMC in the development of the new clinic. She founded the online community after her daughter, Ally, now 7, was born with microtia and atresia and initially found a dearth of information from doctors treating her child.

She said the combined atresia-microtia clinic will offer the best care to both local and international audiences.

“I am looking forward to the new clinic helping so many families” she said. “It’s not just for me, it’s not just for my daughter — it’s for every family who has a loved one with microtia and atresia who would like to know what all of their options are and find the answers they are looking for. I am proud to be a part of the new clinic that is being offered at Vanderbilt.”

Eavey said, “Very few clinicians take on the challenge of caring for these wonderful patients, which creates a geographic challenge for families to engage with experienced individuals in various parts of the country. I have been serving microtia and atresia patients since the 1980s and the talent and the breadth of reconstruction and hearing solutions that we have assembled here at Vanderbilt is unmatched anywhere on the planet — to my knowledge. Historically, from research efforts we have determined that microtia is partially genetic in origin and we later described the first gene.

“We want to learn even more about this condition and anticipate that our systemization efforts will optimize clinical care, educational opportunities and discovery results for these special families,” Eavey said.

Media Inquiries:
Matt Batcheldor, (615) 322-4747
matt.batcheldor@vanderbilt.edu

Filed Under: Events, History

Helping Malosi hear his best thanks to Ear Community and Oticon Medical

June 2, 2017 By Leave a Comment

Malosi hearing sound better for the first time with a donated Oticon Medical Ponto 3 SuperPower sound processor on May 19th, 2017.

Ear Community is excited to share this sweet story about a little boy named Malosi Sualua who was born with Left Microtia and Atresia.  Malosi is 4 and lives in Laguna Beach, CA with his two older sisters and parents, Heidi and Leie.  Malosi means “strength” in Samoan and his mother, Heidi, says that the name really suits him.  “He is tough, he is sweet, and he is smart.”  When Malosi was born, his parents were given conflicting information about what the next steps would be.  They were told things like “he only needs one good ear” and “you must get a BAHA on him or he will lose speech and development”.  During the early days when Malosi was just an infant, Heidi and Leie couldn’t just enjoy their precious little boy, they had to face their new reality and try to go from there.

In February, this year, Heidi reached out to Ear Community.  She needed someone to talk to who understood what she was going through with her adorable little boy.  After exchanging e-mails and a phone call, we knew that Ear Community needed to help.  Through the https://www.oticonmedical.usincredible connections with Oticon Medical, Ear Community was able to secure a Ponto 3 Super Power on a soft band head band for Malosi.  On May 19th, 2017, Malosi went to his audiologist, Dr. Maria Abramson at the Hear Now Abramson Audiology in Laguna Beach and received a brand new Oticon Ponto 3 Super Power device and soft band.  When Malosi first had his Ponto on, Dr. Abramson whispered, “Malosi, I love you” into his left side.  He whipped his head around and said, “What’s that?!” Malosi and his family were also able to be introduced to the Oticon Medical Rep, Megan Everson, who gave him his very own Oticon Monkey (complete with a Ponto on, just like Malosi) and played with Malosi while Dr. Abramson went over the details with his mom, Heidi.  Each day he is wearing it longer and longer, and discovering more sounds as he goes.  Heidi said that he likes to put his hand over the Ponto and say, “it’s working!” – he is clearly excited to experience ‘surround sound’ finally.

Ear Community would like to thank Jared Schnackenberg, President of Oticon Medical US, and Alan Raffauf, Vice President of Marketing for Oticon Medical US, for giving our organization the opportunity to help Malosi hear better.  A very special thank you to Beverly Ostrowski of Oticon Medical for helping work with us to improve lives with better hearing.  We would also like to extend a warm thank you to Malosi’s Audiologist, Maria Abramson, AuD at Hear Now Abramson Audiology in Laguna Beach for working with Ear Community to help Malosi.  Thank you to Ear Community’s donors and to the friends and relatives to the late Curt Gorman (past President of Oticon Medical US) who have also helped make it possible for hearing device recipients, like little Malosi, receive the gift of hearing.

As Malosi continues to grow and go to school, his Ponto 3 Super Power is going to give him equal access to the sound he needs to succeed throughout his education and life.  Ear Community has been honored to work with the Sualua family and be able to help Malosi hear better.  Heidi said that she couldn’t tell us what a huge weight was lifted off her shoulders.  That the entire experience, from the first phone call to receiving Malosi’s Ponto 3 Super Power has just filled her heart with so much gratitude.  We are so happy for Malosi and his entire family, and can’t wait to see how he grows.  Good luck, Malosi, may all your dreams come true and may you enjoy all the beautiful sounds this world has to offer!

Filed Under: Events, History

Karen Smith, Executive Director of the Broomfield Community Foundation retires – Mentor to Melissa Tumblin of the Ear Community Organzation

April 5, 2017 By Leave a Comment

Broomfield Community Foundation’s Karen Smith talks with Tom Currigan Senior Director with Kaiser Permanente, who has been a sponsor of Heart of Broomfield for more than 10 years, during the annual Heart of Broomfield Awards banquet on Monday at the Omni Interlocken Resort in Broomfield. (Jeremy Papasso / Staff Photographer)

Karen Smith, Executive Director of the Broomfield Community Foundation, is retiring this fall.  Karen was my mentor who guided me and taught me how to run a nonprofit organization, how to run our Ear Community Organization. I will never forget the day when I met with her to tell her about my passion for wanting to start a nonprofit organization (in 2011) and about the cause that I wanted to support for children and adults who have Microtia and Atresia. Karen loved what I was trying to do and agreed to run it past the Broomfield Community Foundation’s board of directors to see if the Foundation would be interested in awarding a fiscal sponsorship.  The board and Karen then invited me to present to the board of BCF and they loved what I was trying to do and all agreed to give me a chance at being their very first fiscal sponsor where Ear Community would be taken under their wing and guided as a nonprofit organization, being offered 501c3 status.  After helping carry the Ear Community Organization under your wing Karen, for four years until my organization became it’s own 501c3, thank you for all that you did to help me with Ear Community, for understanding my passion for wanting to help people, and for believing in me and my organization’s cause! I would not have been able to do this without your help and to have gotten Ear Community to where it is today.

Article follows:

“After 14 years at the helm, Karen Smith is stepping down as executive director of the Broomfield Community Foundation.”She’s a remarkable person and I don’t think we’ll replace her,” Foundation Board of Directors President Bruce Erley said. “I think we’ll find someone to fill the position, but she can’t be replaced.”

The Foundation was established in 1993.

Smith is incredibly tuned in to the community needs, he said.

“She’s so integrated into the community in every way,” Erley said, “and wears the Foundation on her sleeve.”

Erley announced the retirement at Monday night’s Heart of Broomfield Awards ceremony.

A search team to look for a new director began last fall, he said, and the group hopes to have the job description completed this month. The team, made up of past and present board members, will interview candidates in June and July.

Smith will help the new director for a month or so to transition into the position, and will be on-call the rest of the year.

Janell Daly, the Foundation’s administrative assistant, will remain on staff.

Smith and Erley called Daly a valuable asset to the Foundation.

Losing someone like Smith means losing a tremendous amount of cultural history, Erley said, and Daly carries a lot of that institutional knowledge..

Smith, who has been asked for years when she’ll participate, will compete in this September’s Dancing with the Broomfield Stars as a send-off. A few weeks after that performance will be her last day as director.

Carina Martin, founder and CEO of A Precious Child, remembers when the Foundation awarded the nonprofit its first grant.

“On the day of the reception, I walked up sobbing,” Martin said. “I thought ‘someone believes in me and my organization and the work we’re going to do.’ I just lost it.”

Smith, she said, has been a longtime friend and someone who cares deeply about children.

“She’s always there for you,” Martin said. “She’s one of the kindest people I know.”

Smith will spend her retirement working with her husband in his part-time handyman business and will have time to volunteer around Broomfield.

She said it has been her pleasure to work with the various board and committee members, and witness their dedication to the Foundation and to Broomfield.

The rebranding process the Foundation rolled out last year was an “excellent continuation of the board’s strategic planning process that resulted in a message for the Foundation that we can be united in telling,” she said.

“Our tagline, ‘One Community. Many Hearts. Unlimited Impact,’ says it very well,” she said. “We are a leading voice of philanthropy for Broomfield.”

She is proud that three years ago the Foundation moved to a complete online grant application process that makes it easier for non-profits to plan and more efficient for the grant committee to review applications and see final reports.

The Foundation reached $1 million in its Legacy Partners endowment fund in 2013. Their next goal is to raise $2 million by 2020.

“I so appreciate the donors to the Foundation and hope they continue with their support and that we continue to get our message to the community to expand our donor base and build our Legacy endowment fund,” she said.”

Jennifer Rios: 303-473-1361, riosj@broomfieldenterprise.com or Twitter.com/Jennifer_Rios

 
You will be missed Karen, but I will never forget your help, kindness, knowledge, and generosity.  Thank you for helping me with Ear Community and for understanding my need to help children and adults who have Microtia and Atresia all over the world.
– Melissa Tumblin
Founder and Executive Director of Ear Community
(a Broomfield, Colorado headquartered 501c3 charity organization)
Filed Under: Events, History

Helping Joan hear better thanks to Oticon Medical and the Ear Community Organization

April 5, 2017 By Leave a Comment

Joan Yirenkyi of Greensboro, North Carolina receives a newly donated Oticon Medical Ponto 3 through the Ear Community Organization on April 3rd, 2017.

Ear Community is thrilled to introduce you to Joan Yirenkyi.  Joan is a beauty at 27 years old and lives in Greensboro, North Carolina with her family.  She was born with Treacher Collins Syndrome along with Microtia and Atresia of her left ear and other birth defects.  Being born with craniofacial abnormalities such as Treacher Collins Syndrome can create an extremely difficult path through life.  She has had to undergo several surgeries, including several on her teeth and face.

Joan did not give up; she is a fighter!  She worked hard through school, despite massive obstacles both through her peers and not receiving equal access to all the information.  She has met with countless specialists during her young life to gain better access to sound.  In January of this year, Joan reached out to the Ear Community Organization to see if we could help.

With the help of Oticon Medical, the Ear Community Organization was given the opportunity to donate a new Ponto 3 sound processor to Joan so that she can have access to sound!  On April 3, 2017, Joan was finally able to get her Ponto 3 and gain sound while wearing the soft band head band.  When she tried on her new Ponto 3, Joan said, “I am so happy for this!  Thank you SO much!” Someone with as much spirit and perseverance as Joan definitely needs to have hear voice heard and we know that by giving her the gift of hearing, she is going to do great things!

Ear Community wishes to thank Jared Schnackenberg, President of Oticon Medical US, and Alan Raffauf, Vice President of Marketing for Oticon Medical US, for giving our organization the opportunity to help Joan hear better.  A very special thank you to Beverly Ostrowski of Oticon Medical for helping work with us to improve lives with better hearing.  We also would like to extend a warm thank you to Joan’s audiologist, Dr. Shannon Frymark, AuD at Aim Hearing and Audiology in Greensboro for donating her time and services to fit and program Joan’s new hearing device!  Thank you to Ear Community’s donors and to the friends and relatives to the late Curt Gorman (past President of Oticon Medical US) who have also helped make it possible for hearing device recipients, like Joan, receive the gift of hearing.

Sometimes it takes a village, and we are all happy to be a part of Joan’s incredible journey.  We are so proud of the things Joan has accomplished and faced so far in her life, and we can’t wait to see how far she’ll go.  You are an incredible woman Joan, and you now have the access to sound that you fought for.  Good luck, Joan, show the world how bright you shine!

We’re so proud of you Joan!
Ear Community
www.EarCommunity.org

Filed Under: Events, History

Giving back: how one communtiy member helps a child hear better through the Ear Community Organization

April 5, 2017 By Leave a Comment

Daniel Alejandro (2.5 years old) of Mexico receives a gently used donated Cochlear Americas Baha 4 hearing device from Samantha Pillion of the United States on April 1st, 2017.

Please meet one of our cutest Ear Community members, Daniel Alejandro, from Mexico.  Daniel was born on July 14th 2014 to his wonderful parents Patricia and Daniel.  From the first moment of his precious life, he was admitted into the neonatal intensive care unit and stayed there for an agonizing two months.  During that time, he showed determination and toughness that proved he was ready to fight for his life!  Daniel’s parents didn’t have any answers on his condition, even when they were released from the hospital.  Finally, they met with a geneticist who explained some test results to them.  Daniel was born with a rare genetic disorder that caused him to have Bilateral Microtia and Atresia as well as low muscular tone, strabismus (misalignment of the eyes), and a high degree of hypermetropy which also makes it difficult to see.  Daniel had a long, hard road ahead of him but his parents fought to give him everything he needed.  They made sure he received physical, feeding, and sensory therapy.  Finally, when Daniel was almost a year and a half old, he started to crawl and pull himself up to a standing position!

Patricia and her husband, Daniel, reached out to the Ear Community Organization to add another fitting piece to little Daniel’s puzzle.  They wanted to help him hear.  For hearing parents, it can be so daunting to have a baby who is born without hearing in either ear.  When that is compounded with countless other conditions and hours of therapy, it can become exhausting.  Ear Community was happy to help, and were able to find a generous donor to give Daniel the chance at sound.

Samantha Pillion

Samantha Pillion, a student at American University had a very gently used Cochlear Americas Baha 4, which she had never quite warmed up to.  She is in the MPA program and set to graduate this year.  Samantha contacted Ear Community, wanting to share this generous gift with someone who needed a device, and we knew exactly who to send it to!  Along with the Baha 4 that Samantha donated, she included lots of goodies for the lucky recipient such as:  Hal-Hen Mini Super Dri-Aid in its original box, 28 batteries with the magnetic tool, listening tool so others to experience listening through the Baha 4, an abutment cleaning brush, sound processor cleaning wipes, sterile wipes, digital battery tester, Bluetooth microphone accessory, cords/clips/wires, a spare back for the sound processor, user manual, and warranty card.

On April 1st, 2017, Daniel traveled with his family from Monterrey Mexico to the United States to pick up his new Baha 4.  The difference in Daniel was almost immediate says his mother, Patricia, “…his face lit up when he heard our voices and we could tell it was a once-in-a- lifetime moment.”  Daniel’s parents were just thrilled for their precious little boy and now can’t wait to see how the world opens up for him now that he has access to sound.

Ear Community would like to extend our warmest gratitude to Samantha Pillion, who thought to share this device with someone who could use it.  She is little Daniel’s hero for hearing.  A special thank you to Luis, a close family relative, who lives in San Juan, Texas who was able to hold onto Daniel’s Baha 4 and keep it for him until his family could pick it up.

Daniel, there is so much good in the world, and our organization is so happy that you can now hear countless joyful things throughout your life!  We wish you all the very best, and are excited to watch you grow and learn.

Here’s to happy hearing, Daniel!
Ear Community
www.EarCommunity.org

Filed Under: Events, History

Ear Community Timeline – How Ear Community began (2010 to Present)…

March 13, 2017 By Leave a Comment


Ear Community
Organization Timeline

Some may wonder how does a nonprofit get started.  Here is the timeline story of how the Ear Community Organization became a nonprofit organization after beginning as an online support group.

September 2009, Melissa Tumblin’s daughter was born and she couldn’t find the answers she was looking for about why her child was born with Microtia and Atresia.

May 20, 2010, Melissa Tumblin started the
“Microtia and Atresia Support Group” on Facebook to help connect families and to help others in the same situation.  She and her daughter also didn’t want to be alone with Microtia and Atresia.  This support group quickly became a global support group within the first year.

June 2010, Melissa attends a training course in IEP and 504 Plans to her learn how to help children and their families advocate better who have hearing loss in the school classroom.

June 11, 2011, Melissa Tumblin and her family host the first “Microtia and Atresia Support Group” family picnic for Microtia and Atresia families in Denver, Colorado.  After driving around to 13 grocery stores asking for gift cards to be donated to help provide food for this event, Cochlear Americas and Oticon Medical offer to help with this picnic after discovering the help that Melissa and her family were offering to the community.

October 11, 2012, Melissa Tumblin begins working on creating the Ear Community website that would be used as a portal of information to help medical professionals and families with loved ones who have Microtia and Atresia all over the world.

February 12, 2012, the Ear Community website is launched and a press release goes out announcing that the website is the “First to offer support and resources to individuals and families around the world living with Microtia and Atresia and associated syndromes including Hemifacial Microsomia.

During February of 2012, Melissa Tumblin was encouraged by many to start a nonprofit organization for the Microtia and Atresia community.

February 2012 – As a stay at home parent, concerned about the amount of work that may be involved with running a nonprofit organization, Melissa Tumblin reached out to a couple of local 501c3 nonprofit organizations for guidance, in which one offered to take her under their wing and mentor her.  This nonprofit organization was called the Broomfield Community Foundation, the city’s community organization in which Melissa lives in in Colorado (Broomfield).

On August 16, 2012, after applying, interviewing, and presenting to the Broomfield Community Foundation, the Foundation agreed to take Melissa and the Ear Community Organization under their wing and grant her 501c3 status through their organization as a fiscal sponsor recipient.  Till this day, the Broomfield Community Foundation remains impressed with Melissa’s drive to help Microtia and Atresia families find answers and support about Microtia and Atresia.

During the summer of 2012, Ear Community hosted (7) picnics across the United States, including (2) in Canada.

During the year of 2013, the Ear Community Organization is given the opportunity, through industry relationships that Melissa developed, including Microtia and Atresia donor families, to begin helping children in need of hearing devices obtain donated hearing devices thanks to Cochlear Americas and Oticon Medical believing in Ear Community.  The organization was also able to begin accepting donations with 501c3 status, allowing the organization to award college scholarships and begin to provide for operational costs of the organization.

April 2013, Ear Community is given the opportunity to help further education about Microtia and Atresia with the help of Oticon Medical proudly sponsoring the accredited webinar about Microtia and Atresia through AudiologyOnline, on a Parent’s Perspective about Microtia and Atresia.  This course continues to remain a helpful educational resource for medical professionals and families of loved ones with Microtia and Atresia.

July 2013, Ear Community is invited to present about Microtia and Atresia  at the EAA (Educational Audiology Association) conference.

2014 till present, Ear Community continues to give back to the Microtia and Atresia community, globally, by hosting (6-7) picnic events each summer that bring families together in the same situation.  Some abroad Ear Community picnic locations include Denmark, South Africa, Australia, the UK, Spain, and Canada.  Ear Community continues donating hearing devices (over 60 hearing devices donated since 2016), awarding college scholarships, and helping with financial assistance toward surgical travel cost reimbursement when funds are available.

April 2015, Melissa Tumblin is asked to sit on the advisory board for :Project MyEar” in hopes of helping with the development of stem cell research for bioengineering ear cartilage.

June 29, 2016, Melissa Tumblin finally believes that she is ready to apply for 501c3 status for Ear Community to become its own entity.  Ear Community, Inc. was proudly awarded 501c3 status by the IRS just two months later (August), after applying.

September 2016, Melissa Tumblin presents another webinar that is proudly sponsored by Oticon Medical and offered through AudiologyOnline, helping discuss the struggles about unilateral hearing loss for children, after advocating for her daughter for the past 7 years.  This webinar continues to be viewed and was organized in hopes of promoting educational awareness about how hearing loss can affect individuals differently, even if they still have one working ear.

November 9, 2016, in an effort to help promote educational awareness and to help raise public awareness, including stopping the bullying, Melissa Tumblin applies for a National Awareness Day for Microtia and Atresia families.  On November 9, 2016, the Ear Community Organization hosts it’s very first National Microtia Awareness Day where families all over the United States, including other countries as well, celebrated our first National Awareness Day together, for Microtia individuals, everywhere.

January 2017, Melissa Tumblin begins working closely with Vanderbilt University Medical Center on the launch one of the first all options Microtia and Atresia clinic.

Here are also a few helpful articles and resources that may be helpful to families who have loved ones born with Microtia and Atresia:
– Our Story article
– Mixed Feelings article
– First National Microtia Awareness Day
– Microtia and Atresia webinar through AudiologyOnline (sponsored by Oticon Medical)
– How to overcome the struggles of pediatric hearing loss through AudiologyOnline (sponsored by Oticon Medical)

The Ear Community Organization is a 501c3 nonprofit organization.
Federal Tax ID#46-0923897
www.EarCommunity.org

Filed Under: Events, History

Ear Community Announces 2017 Summer Picnics for Families of Children with Microtia and Atresia

March 10, 2017 By Leave a Comment

AudiologyOnline News Release


The mission of AudiologyOnline is to enhance the quality of life for the patients and clients in the care of the professionals we serve.

We support this mission by:

  • Providing the most relevant, convenient, and economical continuing education opportunities presented and authored by the leading experts in their respective professions to enhance clinical knowledge and skills.
  • Connecting quality professionals to the right job to better serve clients and patients.
  • Enhancing students’ clinical knowledge and skills to become meaningful contributors to the profession.

 

February 27, 2017

_______________________________________________________________________________________

February 20, 2017.  Ear Community, a 501(c)(3) nonprofit organization and global support network for individuals born with microtia and/or atresia, is excited to announce its 2017 schedule of free family picnics.

Since 2011, Ear Community has hosted picnics to bring together families who have children with microtia and atresia. 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. Ear Community’s picnics offer families the opportunity to come together, share experiences, and make new friends. The picnics offer a delicious lunch, as well as plenty of games and activities such as balloon artists and magicians to ensure children have fun.  Parents and caregivers can also meet world-renowned professionals including microtia and atresia repair surgeons, anaplastologists, ENTs, and audiologists, and learn about all the latest hearing and medical devices from representatives of leading device manufacturers. Ear Community thanks the 2017 summer picnic sponsors: Cochlear Americas (Platinum), Oticon Medical (Gold), and Medtronic (Silver), as well as Stryker for providing information about Medpor.

Ear Community believes that education is empowerment, and looks forward to hosting more welcoming and informational experiences for families via this year’s summer picnics. More information including contact information for RSVPs can be found at http://earcommunity.org/6823-2/6823/

For more information about AudiologyOnline, click here.
We look forward to seeing everyone this summer at our organization’s family events!
Ear Community

Filed Under: Events, History

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

February 22, 2017 By Leave a Comment

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

Filed Under: Events, History

2017 Ear Community Microtia and Atresia Summer Family Picnics

February 20, 2017 By Leave a Comment

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!

_______________________________________________________________________________

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!

Filed Under: Events, History

How one father was willing to travel to another country to help his daughter hear better with the help of Oticon Medical and Ear Community

January 19, 2017 By Leave a Comment

Raheeg Abdelrahman of Sudan, 4 years old, January 2017 recipient of (2) Oticon Medical Ponto Plus’.

We are excited to introduce you to Raheeg Abdelrahman, a lovely four-year-old girl who lives in Sudan with her younger twin siblings, her mother, and her father Eltahir.  She was born with bilateral Microtia and Atresia, her father said that they couldn’t find a hearing device in Sudan so they traveled two days to Egypt in order to meet with an audiologist who could help them find something to help Raheeg hear.  Sadly, due to no insurance and financial difficulty, the family had to return home without a sound processor.

Through Ear Community’s amazing partnership with Oticon Medical, our organization was able to donate two Ponto Plus hearing devices on January 11, 2017 to Raheeg.  Because Raheeg’s family had to travel two days each way from Sudan to Egypt, it was a very exciting trip for her.  Eltahir said, “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!”

When Raheeg was finally fitted for her Ponto Plus devices, she absolutely loved them and showed very good responses.  Her father said, “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!”

Ear Community would like to offer special thanks to the entire team that made it possible for Raheeg to hear.  Thank you to Oticon Medical for donating the Ponto Plus devices and for helping make it possible for Raheeg to receive her new hearing devices.  Thank you to Sr. Director for Clinical Research and Training for BAHS, Dr. Tove Rosenbom, for programming Raheeg’s Pontos and for making sure she had everything she needed with them, including extra batteries.  Thank you to Claus Frees Horneman, the Oticon Medical rep who made sure Raheeg’s devices made it to Egypt by hand delivering them!  We would like to thank the donors to the Ear Community Organization who also helped make it possible for Raheeg to receive her hearing devices, including donors who are friends and relatives to the late Curt Gorman and Gabe Murphy who wanted to help a child hear better.

A very special thank you to Alan Raffauf, Vice President of Marketing for Oticon Medical US, for choosing to donate two new Oticon Medical Ponto Plus hearing devices to Ear Community so they could be donated to Raheeg to help her hear better during her early years.   As a tribute to Curt Gorman, Oticon Medical’s past president, who passed away in August of 2015, may Raheeg thrive in the hearing world with her new hearing devices and never miss a beat as she continues to grow.  Curt Gorman had a passion for helping children hear better as he was a pioneer in the hearing device industry, especially for bone anchored hearing devices.   Many who loved and knew Curt have made donations to also help children hear better through the Ear Community Organization.  Thank you for everyone’s support and for helping Ear Community continue with its mission of helping individuals with Microtia and Atresia. Oticon Medical believes in helping individuals with hearing loss so that they can live a better quality of life. 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.”

Raheeg, we are so proud of you and we hope that you have the very best life possible!  We hope that you flourish and grow, especially now that you have access to the sounds you have craved for so long!  We hope to hear how your life continues to improve and progress, congratulations on hearing your best Raheeg!  Here are some adorable pictures of Raheeg with her brand new Ponto Plus’.

Melissa Tumblin
Founder and Executive Director
and Ear Community Board Members
Ear Community Organization
www.EarCommunity.org

Filed Under: Events, History
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