At the National Foundation for Ectodermal Dysplasias (NFED), one thing is for sure, we love our families! When we support our families, we certainly appreciate when they support us back. One of the most loyal and sustaining ways to support the NFED is through our monthly giving program, the Smile Makers.
One of our amazing NFED Smile Makers is Kim.
Kim grew up in the 70s and 80s with hypohidrotic ectodermal dysplasia (HED). Since she could not sweat, gym class was never her favorite and the words “go outside and play” didn’t motivate her all that much. There was no internet back then, and this condition was not in your everyday encyclopedia series.
So, although she was diagnosed and knew that she had a mild form of an ectodermal dysplasia, she had very little information on it. She knew that she had very few permanent teeth and did not like hot weather. Her hobbies included going to the movies and reading books.
One common symptom of HED is missing or misshapen teeth. Due to not have any bottom front permanent teeth, her dentist made an overdenture when she was about 16. At 18, she asked him to make over dentures for the top as well. Her dentist was over the moon to help. They both wondered why they didn’t think about it years ago!
Oddly enough, she found out about the NFED a few years ago while searching for a charity on Amazon Smiles. Excitement overtook her.
For the very first time in her life, she saw pictures of people with the same condition. She had accepted her condition as part of who she is as a person. When the internet did come along, it never occurred to her to search for ectodermal dysplasias.
When she researched the NFED website, her first instinct was to tell all the parents about overdentures and how awesome they are. But, on the home page was an article on how to get your kids to wear their dentures. She realized how different her life would have been growing up if her mom knew about the NFED.
Kim soon reached out to us.
I went to advocate on Capitol Hill in July of 2018 with the NFED and for the first time ever, I met people like me! It was an emotional time for me to finally be in a room where I fit in. The NFED has helped me, but I also learned so much more about my condition and that there are so many more odd quirks about myself (such as dry eyes) that come along with HED.
Today, Kim works as a clinical therapist where she makes a positive difference in people’s lives by providing counseling services through an agency that she founded. She helps many people who suffer from bullying when they were kids. Kim understands their pain. Kids teased her with horrible names like “toothless old granny” and “horse hair” because of her condition.
Since she cannot help people with ectodermal dysplasias on a daily basis, she chooses to personally donate money every month to the NFED. Her generosity extends beyond her gift alone. She also doubles her donation with a matching monthly gift from her counseling agency.
It is my way of paying it forward so that the NFED kids of today get the best help they can. By going to Capitol Hill last year, I am actually helping myself as well because I am educated about my dental cost and insurance coverage. By supporting the Ensuring Lasting Smiles Act (ELSA), l have the power to help myself directly while helping others.
Thank you, Kim, for supporting our work that gives you and so many others the tools to advocate for ELSA and to support our NFED families through treatment assistance, support and research.
For more info about how to become a Smile Maker, click here.