As Tim recalls, Anthony’s mother, Christina D’Allesandro, reached out to Marvel through their general email. Despite all of the requests that Marvel gets as one of the world’s most prominent entertainment companies with a library of over 8,000 characters, they didn’t take her request lightly.
Bill Rosemann, a Marvel editor, took special notice. He artist Manny Mederos and Trades Department Editor Nelson Ribeiro, sent the D’Allesandro family comic book covers featuring their very own versions of honorary Avenger Blue Ear, inspired by Anthony. Then, Mederos did a team up sketch between Blue Ear and Hawkeye, who suffered hearing loss as an Avenger. This started the life and adventures of Blue Ear, who’s now an official Marvel character and stars in his own one-shot (for now) comic book.
While Marvel works to support as many people as possible, they’d never done it in exactly this way before. For example, Tim mentioned Marvel’s character, Captain Citrus, in support of Florida orange growers and to encourage a healthier diet for children.
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.
There are many amazing aspects of life that we often take for granted. Sometimes, we don’t realize how important and amazing our basic senses are until we no longer have their full ability.
Earlier this year at the Oticon Medical Patient Advocacy Workshop, Ponto users and parents shared the sentiment that it’s hard for people who have never experienced hearing loss to understand its impact.
That’s why we handed over the keys. We’ve handed our Instagram account over to Ponto users to help others understand why #SoundMatters from the perspective of those who experience it every day.
Meet Vishal, a 10-year-old musician with Microtia and Atresia. We first met Vishal when he posted this message on the Oticon Medical Facebook Page:
10 years old – born with Microtia and Aural Atresia.
Student of grade 5.
I grow up in Germany because my Dad has his office out here.
He loves music.
At first he is shocked because his son is born with Microtia.
Then he remembers his conversation with God before I was born.
God was looking for parents for me like the ones I have.
My Dad promised God to be the best Dad ever.
The German Doc told my Dad just after my birth that I would not be able to hear nor speak.
My dad trusts in God and in His ways.
I get a Softband Oticon.
I win a first prize in a music competition in Germany!
Here’s Vishal to share a bit of his musical journey.
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.
Last weekend was one of our favorites of the year. We gathered over 20 patient families from all around the United States at our U.S. headquarters in Somerset, New Jersey. While we spent plenty of time talking, laughing, sharing stories and tears, we came together to work—to work on building a better future for those who have yet to begin their journeys in getting Bone Anchored Hearing Systems.
On Saturday, we came together for a full day of design thinking workshops that asked two key questions:
How can we make the road easier for those who are starting their journey?
What’s are next things we’ll do as advocates, if the sky’s the limit?
Note: Mark Ruffalo is not a Ponto user, and he is not endorsing Oticon Medical’s products. He has gone through the experience of having an acoustic neuroma– that’s why we are sharing his incredible story.
There’s a number of Bone Anchored Hearing System users who have been through the experience of overcoming an Acoustic Neuroma. The diagnosis can be shocking and overwhelming. Today, we’re shedding more light on Acoustic Neuromas with information from the Acoustic Neuroma Association— including an incredible video account of actor Mark Ruffalo’s experience.
First things first, what is an Acoustic Neuroma? According to the Acoustic Neuroma Association: “An acoustic neuroma, known as a vestibular schwannoma, is a benign (non-cancerous) growth that arises on the eighth cranial nerve leading from the brain to the inner ear. This nerve has two distinct parts, one part associated with transmitting sound and the other with sending balance information to the brain from the inner ear. The eighth nerve, along with the facial or seventh cranial nerve, lie adjacent to each other as they pass through a bony canal called the internal auditory canal. This canal is approximately 2 cm (0.8 inches) long. It is generally here that acoustic neuromas originate from the sheath surrounding the eighth nerve. The seventh or facial nerve provides motion to the muscles of facial expression.”
Acoustic Neuromas are typically slow growing over time. Continued tumor growth that goes untreated may threaten neurological function and even life. The treatment options are observation, surgical removal or radiation.
Actor Mark Ruffalo knows the experience of having an Acoustic Neuroma all too well. After having a nightmare about having a brain tumor, Mark went to the doctor knowing his request for an MRI would sound paranoid. But to everyone’s surprise, except for Mark, he was right.