Today we’d like to introduce you to Melissa Tumblin.
Hi Melissa, so excited to have you on the platform. So before we get into questions about your work-life, maybe you can bring our readers up to speed on your story and how you got to where you are today?
Sometimes, a unique event in our life causes us to choose a different path or journey from the one we are on. After my youngest daughter, Ally, was born with a rare congenital condition, known as microtia and aural atresia, where she was born without her right ear and no ear canal, resulting in hearing loss, my family felt lost and alone struggling to find the answers we were looking for. We were told what Ally was born with was rare. So, we thought we were the only family in the entire state of Colorado with a baby missing her ear. As a mother, I blamed myself, thinking I had done something wrong during my pregnancy, even though I was good and had a perfectly healthy and happy pregnancy. I had recently stepped away from my career in medical device marketing to stay at home. During my career, I helped medical professionals advocate for their patients in the OR with the surgical device equipment I marketed. After advocating for so many, I realized there was no one there to help advocate for me and Ally. And so, I began advocating for something that would later become my calling.
For the first six months of Ally’s life, I worried about her and I cried. I was concerned she would be picked on or teased because of missing her ear and having a slightly crooked smile. When Ally was about six months old, I decided to start a support group on FB. I thought long and hard about putting my child out there, which was scary, but I did it so I could help others and so Ally and I would not feel alone with microtia and atresia. One year later, my support group had become completely global with families joining from all over the world, all having the same questions I had! I couldn’t believe how many families just like mine felt lost and alone and could not find the answers they were looking for when it came to microtia and atresia. So many wondering why did this happen to their child? Mothers wondering if they did something wrong during their pregnancy! Will my child be bullied and teased? What are our options? Families wanting to connect with each other! Then, one day, I decided to host a picnic for families of children with microtia and atresia here in Colorado. Our get together was at Cheesman Park. Even though it rained off and on and it was a bit muddy, to my surprise over 100 people showed up, including one surgeon from Texas who specializes in microtia repair, and it was an incredible day! A week before my event took place, I received a call from Cochlear Americas asking if I had anything fun for the kids. Since I had no funding, I didn’t have anything for the kids, but Cochlear said, well you do now! And, they provided a face painter for our special day. Then, I received a call from Oticon Medical, and they asked if I had food for our special day. I didn’t, but they said, well you do now! And, they graciously provided a picnic lunch for our families that day! That day was June 11th, 2011 and I will always remember our first picnic. Since that day, I have never looked back and that was the start of creating a community that was much needed!
Fast forward 16.5 years later, I turned my support group into the nonprofit called, The Ear Community Organization. Today, the Ear Community is the leading nonprofit for our rare cause and is the first parent-driven grassroots nonprofit to pave the way for the microtia and atresia community. Ear Community has brought thousands of families and medical professionals together through our priceless events since 2011, awarded nearly 200 bone anchored hearing devices since 2012 and awarded over 30 college scholarships so far! Ear Community has also championed genetics research on microtia yielding new findings on chromosome 3, FOXI3. Our organization has also had Federal Legislation introduced by Congressman Joe Neguse, known as Ally’s Act, named after my daughter Ally that would close the loophole for private insurers to deny insurance coverage for bone anchored hearing systems and cochlear implants. We hope this bill passes someday! Our organization also established National Microtia and Atresia Awareness Day, which is embraced and celebrates our community all over the world every November 9th!
Founding the Ear Community Organization, our website, our online support groups and all of the much needed programs our nonprofit offers to our community was a tremendous amount of work! Truly a labor of love! While I have often been called a force of nature – I really am just someone who wanted to help give back to others in the same situation and make things easier for the next family who has a child born with microtia and atresia. Through this work, I truly hope that no one with microtia and atresia ever feels alone again, because they have an entire beautiful community waiting for them! Ear Community has changed lives and saved lives!
Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
Other than my passion and drive to make this happen and to keep going when anyone would have just stopped, I have been able to keep our organization’s doors open. It has not been easy because running a nonprofit (I like to say) is the hardest job next to raising kids. Finding funding and on-going donors has always been difficult. Ear Community does not receive government grants or have a lot of donors because we are a rare cause. We rely on the public for donations. Many nonprofits do not survive the first five years. Ear Community is still here! It hasn’t been easy though. As one person running Ear Community and wearing all of the hats, there is not a lot of time left to organize fundraisers when I am doing everything else. Ear Community survived COVID-19, which was really scary, when all of our events are community events. I had to turn our in person events into virtual events. I worry about keeping sponsors and donors every year. There comes a point where I have to make a decision about barely having an income or closing the doors on my passion and all of the hard work I have done and going back to work to pay the bills. Four years ago, I thought I would have to close Ear Community’s doors because of lack of funding and donations. I thought I would have to put myself back out there and look for a job again and put Ally’s Act on the back burner, working on this legislation whenever I had time to at night. Just when I was about ready to update my LinkedIn information, by some miracle, a donor came forward who has a child just like Ally, who found our organization’s website, wanting to help give back. Ear Community is still here because of one family! I still get chills when I think about the timing just when I was about to give up – someone was there!
Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
Previously, I worked as a Product Manager for a medical device company. My degree is in Biology/Psychology, which was geared toward pre-med. After becoming a mom, I decided to stay home, with every intention of going back to work in the same field. After my youngest daughter, Ally, was born, my life changed with a newfound passion that has allowed me to help make a difference for others and give back. I never thought I would be running a nonprofit organization, but this is part of my life now and my third child. Thanks to Ear Community, our organization has gone on to to incredible things for so many families! I always say, even though we are tiny, we are mighty in the things we do! I am known for being a prominent hearing healthcare activist and professional advocate for the microtia and atresia community. I am a community influencer when it comes to hearing loss and legislation.
While I am proud of the work I have done, I am most proud of my daughter, Ally, because I have learned so much from her over the years! Through my years of running Ear Community, I have some neat opportunities come along that included beening invited to present before the FDA about microtia and atresia and I was recruited by Vanderbilt University Medical Center to launch their first all options microtia and atresia clinic, which was such an honor! Also, my work collaborating on genetics research as a co-investigator with Harvard, MIT and Vanderbilt means so much to me because it allowed me to help provide other mothers with some peace of mind when it comes to microtia and atresia because I didn’t want another mother to ever blame herself thinking she had done something wrong during her pregnancy to cause her child’s ears from developing.
I would say that my determination and drive for wanting to help bring others together and find the answers our rare community is looking for is what sets me apart from others. I don’t think anyone else would have done things quite the way that I have done things with Ear Community. I wanted to make sure our community has a place to call home and to know that someone is working on what is needed for our children and adults, even if it was a parent like me.
What has been the most important lesson you’ve learned along your journey?
That people often feel lost and alone and to meet someone in the same situation can truly mean the world to them. Being there for someone, helping them and just lending an ear is needed and not always something that everyone will take the time to do. Being there for a community is very important and can often times change people’s lives.
Contact Info:
- Website: https://www.EarCommunity.org
- Instagram: https://www.instagram.com/earcommunity/
- Facebook: https://www.facebook.com/profile.php?id=100064626824539
- LinkedIn: https://www.linkedin.com/in/melissatumblin/
- Youtube: https://www.youtube.com/@earcommunity7415
- Other: https://youtu.be/1oOccVp876c
