Helping Joey hear better just in time for school

August 15, 2017 By Leave a Comment

Joey Ordonez of Texas is thankful to hear better thanks to receiving his donated hearing device from Stephen Weiss of Pennsylvania. July 2017

Stephen Weiss, a CPA in Gwynedd Valley, Pennsylvania was excited to upgrade his current hearing device to a newer model. When Stephen upgraded, he wanted to donate his current hearing device to a charity organization where his hearing device could go on to help someone else hear better. After receiving his new Oticon Medical Ponto Power Plus 3, Stephen found the Ear Community Organization to donate his gently used Ponto Plus to that he had used for less than one year.  With Stephen’s donated Ponto being newer and in excellent condition, Ear Community was able to find a child who could benefit from Stephen’s donated Ponto.

Lorraine Ordonez was hopeful that she could find help obtaining a hearing device for her son, Joey, who was born with Microtia and Atresia of his left ear.  Lorraine had applied through her family’s insurance provider for a hearing device for Joey, but they were denied coverage for a hearing device.  Knowing that Joey was struggling with his hearing loss, Lorraine was trying to figure out how to obtain a hearing device for her son so he could hear better.  As a member of the Ear Community Organization, Lorraine belongs to the organization’s Gently Used Bone Conduction Hearing Device group on Facebook and saw a post come across for a hearing device that was being donated through the organization.  Lorraine is very excited that she was able to obtain this gently used hearing device for Joey.  Lorraine told Joey that he would hear better soon because he was finally getting a hearing device.

Joey was fitted with his donated Ponto Plus (made by Oticon Medical) this August thanks to Stephen’s donation.   Joey and Lorraine are so thankful for this gift of hearing! Thank you to Stephen Weiss for searching for a charity organization where he knew he would be given the opportunity to give back to someone else in the community so they could hear better with his hearing device.  Our story is the first to let Stephen know that his donated hearing device went to a little boy named Joey.  Thanks to Stephen’s donation, Joey is now able to hear better and be ready for preschool where he can hear his very best.  Thank you Stephen for your donation and for helping pay it forward so a child could hear better who was unable to afford a hearing device.

Joey is pictured wearing his donated Ponto Plus from Stephen.  Lorraine wishes to thank the Ear Community organization for all that it does for Microtia and Atresia babies.

Filed Under: Events, History

Helping Kavya hear better with the help of Oticon Medical and the Ear Community Organization

August 2, 2017 By Leave a Comment

Kavya Sharma of New Delhi, India received 2 new Oticon Medical Ponto 3 Superpower hearing devices on June 5th, 2017 through the Ear Community Organization.

Ear Community is honored to introduce everyone to our latest Oticon Medical Ponto 3 Superpower hearing device recipient, adorable Kavya Sharma! Kavya is almost two years old and lives in New Delhi, India with her father Ajay and mother Savita. Kavya was born with bilateral Microtia and Atresia, as well as Hemifacial Microsomia and a hole in her heart. She had a rough start, and spent a lot time in the hospital with feeding tubes and oxygen therapy.

Savita reached out to Ear Community in the Spring of 2017, asking if there was any way for us to help her daughter to hear. At this time, most of Kavya’s other health related issues have been resolved, but she still couldn’t hear. With bilateral Microtia and Atresia, Kavya could not hear her parents tell her that they love her, she struggled with speech development; and Savita worried about how Kavya would develop friendships and how she would be able to learn at school. She took Kavya to a specialist in Delhi where it was suggested that a bone conduction device could help Kavya to hear and speak because she was not speaking at all.

On June 5th, 2017, Ear Community is proud to have donated two brand new Oticon Medical Ponto 3 Superpower hearing devices to Kavya so she can have full access to sound. Thanks to Dr. Niraj Kumar at the AIMS hospital in Safdarjung, Delhi, India for donating the time to fit the devices to Kavya. He has spent so much time helping Kavya and her family gain the auditory tools she needs. This precious little girl has already struggled to get to where she is, and we are thrilled to be able to help her on her journey.

Ear Community would like to thank Alan Raffauf, Vice President of Marketing for Oticon Medical US, for giving our organization the opportunity to help Kavya hear better. A very special thank you to Beverly Ostrowski of Oticon Medical for helping work with us to improve lives with better hearing.   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 beautiful little Kavya, receive the gift of hearing.  Thank you Oticon Medical for helping donate hearing devices to charity organization’s like Ear Community so we can help children hear better!  Thank you!

Congratulations, Kavya, now the world is completely open to you and you will be able to hear all of the beautiful sounds it has to offer. We are so happy that you can now hear your parent’s voices, and will be able to get the education you deserve.

The Ear Community Organization
www.EarCommunity.org

Filed Under: Events, History

Ear Community National Microtia Awareness Day bracelets are now available…

July 28, 2017 By Leave a Comment

Hi Everyone!
Our National Microtia Awareness Day bracelets are now available for purchase through our organization’s website at:  www.EarCommunity.org/donate  This is a fund raiser for our organization.  We have a secure link for making a credit card donation.  In the DESCRIPTION LINE, (when you make a donation at our donation link), you can briefly put what you would like of the items below.

***  Order deadline for receiving items in time for November 9th the United States was October 25th every year ***

***  Orders can always be taken throughout the year for Christmas gifts, birthday gifts, etc…  ***

 

Below are the awareness bracelet items that our organization offers:
Many of you have been inquiring over the past months about purchasing our organization’s Microtia awareness items to show your support for our cause for Microtia and Atresia.  We now have beautiful hand made Swarovski beaded bracelets available, including bangle bracelets, and awareness wrist bands.  These items will help us raise awareness for Microtia and Atresia everyday or so you can have them for our National Microtia Awareness Day on November 9th.

As a fund raiser to our Ear Community Organization, we have the following jewelry items now available (see labeled images):

1. The Microtia Awareness vintage bracelet made of Swarovski blue and white beads with silver accents and one ear charm, heart charm, and ribbon charm. This bracelet is hand made and can be made to your size. Just measure your wrist and let me know your size in your donation order on the description line. Otherwise, the standard size is a little over 7″. This bracelet costs $50.00/ea or until sold out.

2. The personalized Microtia Awareness vintage bracelet made of Swarovski beads and pearls with silver accents, birth stones, name, and one ear charm, heart charm, and ribbon charm. This bracelet is hand made. You will need to provide me with information on the size, name, and birth stones in the description line along with the rest of your order. This bracelet is $60.00/ea or until sold out.

3. The Microtia Awareness bangle bracelet with Microtia blue heart and ear charm and white and silver beads. This bangle is a size 8″. This is the only size these come. This bracelet costs $45.00/ea.

4. Microtia and Atresia Awareness wrist bands with EarCommunity.org and our awareness ribbon on it. A minimum order of 20 for $25.00.

* This pricing on all four bracelets includes shipping for the US only. If you live outside of the US, you will need to send me an e-mail directly at EarCommunity@gmail.com letting me know what your shipping address is. I’ll let you know how much the approximate shipping will be and you can decide from there.

* To make your donation order, place your order through Ear Community’s secure donation link at: https://earcommunity.org/donate/ In the DESCRIPTION LINE, please briefly state what you would like:
Example: 1 bling car, 2 non-bling pins, 1 awareness bracelet, 1 personalized (Lucy) emerald, size 6″ ( (see next post). Then, make sure your total is correct before finishing your order.

* All proceeds go to the Ear Community Organization. You will receive a generated thank you e-mail for your donation that you can use for your tax deduction records for end of year.

Ear Community
www.EarCommunity.org

Filed Under: Events, History

Ear Community National Microtia Awareness Day items are now available…

July 28, 2017 By Leave a Comment

Hi Everyone!
Our National Microtia Awareness Day items are now available for purchase through our organization’s website at:  www.EarCommunity.org/donate  This is a fund raiser for our organization.  We have a secure link for making a credit card donation.  In the DESCRIPTION LINE (when you make a donation at our donation link), you can briefly put what you would like of the items below.

***  The order deadline for receiving items by November 9th in the United States is October 25th each year ***

***  Orders can always be taken throughout the year for Christmas gifts, birthday gifts, etc…  ***

Below are the costs for our awareness ribbons, static clings, brooch pins, and car decals:
As a fund raiser to our Ear Community Organization, we have the following items now available (see labeled images):

1. Awareness Ribbon window/bumper sticker – $25.00/ea
2. Awareness Ribbon static cling that can be put on windows, microwaves/fridges, laptops, coffee mugs, etc… – $25.00/ea
3. Awareness Ribbon non-bling brooch pin – $35.00/ea
4. Awareness Ribbon bling brooch pin – $45.00/ea
5. Awareness Ribbon bling window car decal – $45.00/ea

* The above pricing includes shipping for the US only.
__________________________________________________
Our beautiful Microtia Awareness ribbon was designed by Mark Johnson who’s daughter, Eva, was born w/Microtia and Atresia. Our beautiful bling and non-bling brooches and bling car decals were hand made by Elizabeth Bunting. Elizabeth’s Granddaughter, Hannah, was born w/Microtia and Atresia and when she heard about our National Microtia Awareness Day and our ribbon, she jumped at the chance to make these ribbons!  Elizabeth is known for putting the bling in the Dallas Cowboy cheerleader outfits. Our ribbons have that same bling! Elizabeth makes many of these same awareness items for the NFL and for other nonprofit organizations supporting Breast Cancer, Lupus, Leukemia, Brain Tumor, and the Military. Thank you Elizabeth! Our awareness ribbons are beautiful!
___________________________________________________

IMPORTANT ORDER INFORMATION:
* The prices above include shipping for the US only. If you live outside of the US, you will need to send me an e-mail directly at EarCommunity@gmail.com letting me know what your shipping address is. I’ll let you know how much the approximate shipping will be and you can decide from there.

* To make your donation order, place your order through Ear Community’s secure donation link at: https://earcommunity.org/donate/ In the DESCRIPTION LINE, please briefly state what you would like:
Example: 1 bling car, 2 non-bling pins, 1 bracelet (see next post). Then, make sure your total is correct before finishing your order.

* All proceeds go to the Ear Community Organization. You will receive a generated thank you e-mail for your donation that you can use for your tax deduction records for end of year.

Ear Community

 

Filed Under: History, Uncategorized

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
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