In the middle of winter, it’s always fun to look ahead to the summer. Summer time also means it’s time for Ear Community’s Microtia and Atresia Summer Family Picnics. The picnics provide an incredible opportunity for Microtia and Atresia families to come together, share experiences and make new friends. Medical professionals also join in the fun and are available to answer questions and help to educate families on options for hearing loss. Families will even be able to test out the newest state-of-the-art hearing products.
We’re thrilled to once again be a sponsor and an active participant in the picnics. We’ve met so many of you through these amazing events. Here’s where you can learn about some Ear Community connections ahead of the events.
Here are some pictures from last year.
Weesie Pals are custom stuffed animals that can be made to have a little ear and stuffed toy bone anchored hearing device. Weesie Pals are created by Erin Wozniak who was inspired by her daughter Elyse. Elyse, who’s nickname is Weesie, was born with left-side Microtia and Atresia, meaning her ear did not fully develop. Elyse, now two years old, wears a Ponto Pro on a softband.
“When Elyse was an infant, I wanted her to have some type of toy that she could identify with and a way to reinforce her wearing the Bone Anchored Hearing System (BAHS). Also, you can take the device off of the stuffed animal and put it on anything– even someone else. Even mommy can wear it!”
When Erin made the first Weesie Pal, a mouse, Elyse loved it and wouldn’t put it down. As an artist and art teacher, Erin is always making things but oil painting and drawing are her expertise. When it came to sewing, she taught herself. She’s a quick study, because now there are a variety of options.
Today, we would like to share a special story. After years of confusion and frustration, Camilla was able to connect with peers and mentors–including our friend Justin Bays–who helped lead her to the hearing device that’s right for her– all thanks to the incredible efforts of Ear Community.
Camilla was Ear Community’s very first college scholarship recipient. Camilla is now working on her graduate degree, and she’s a wonderful single mom too! Camilla’s family are long-time supporters of Ear Community. Camilla is also a member of the Hearing Loss Association of America (HLAA).
Here’s Camilla to tell her story.
You asked, we listened. You asked for more information on how you can help spread the word about your experience. So, we’re offering regular tech tips. Each tech tip shares a free and unique social way to share your story and experience the stories of others. This week, we’re covering Canva, a free online tool that allows you to easily create stunning visuals without graphic design skills.
Photos with quotes, hashtags and fun designs have been making their way around the web for quite a while now. But, what hasn’t been around for long is the ability to do design in a really simple way– without buying and using expensive programs. That’s why we want to introduce you to one of our favorite tools. Canva is a free user-friendly tool that allows you to create professional looking designs. Our friend and fellow Ponto wearer, Guy Kawasaki, is also the chief evangelist for Canva. His clout behind any technology definitely doesn’t hurt!
Canva calls itself as the easiest design program in the world. And it’s true–you don’t need any experience to use it and the designs come out looking fresh and polished.
Here’s how to get started:
A couple of months ago we held the first ever Oticon Medical Patient Advocacy Workshop. While events in the past have focused on gathering and getting to know each other, this event focused on bettering the experience for those who need or will need bone anchored hearing systems in the future.
The top concern included education for those who were experiencing the world of bone anchored hearing for the fist time. Ponto wearers and families shared that they felt frustrated at the beginning of their journey, because they didn’t get all of the information they needed outright— it took research, time and, in many cases, probing to get answers from professionals. The statement “I wish I would have known what questions to ask” is something that we heard from the group more than once. Kelley Dwyer, an Audiologist who joined our group along with her brother Derek, who got his Ponto Plus and the Ponto Streamer earlier this year, also mentioned that it’d be helpful for Audiologists if patients had more access to information and a set of questions too.
Many people in the group mentioned that they didn’t know that there were options when it came to choosing a bone anchored hearing device. For some, it took years to make the realization and in some cases, it lead to surgery for a new abutment to make a switch.
We’re working to fulfill the needs we uncovered and develop the ideas the group had from the workshop. Today, we’re asking for your help to bring one of those ideas to life.
Educating teachers and children on the importance of using FM systems in the classroom came up many times at our Patient Advocacy Workshop. Here’s a great video by St. John’s Medical Center that does just that. This is a great tool that shows the difference a FM system can make for a child with hearing loss. Share it with your children and their teachers.
On October 31, after a several-month-long battle, the Centers for Medicare and Medicaid Services (CMS) ruled that Bone Anchored Hearing Systems and auditory osseointegrated implants (AOIs) will remain a covered benefit for Medicare enrollees with qualifying indications.
As many of you know and have experienced, Bone Anchored Hearing Systems (BAHS) are an important and life-changing tool to fight against hearing loss that cannot be duplicated by traditional hearing aids. More than 100,000 people are currently benefitting from a BAHS.