By Sarah Tevis Poteet, D.D.S., P.A.
NFED Board of Director member since 2003 & Patient Care Council member
I grew up as part of the NFED family as an affected individual that was missing some teeth. I was a part of an implant clinical trial at the National Institutes of Dental and Craniofacial Research as a young teenager. Because of my years as a patient, I decided that my calling in life was to become a dentist.
After I graduated dental school in 2003, I was asked to join the NFED Board of Directors. They felt like the combination of my dental training and personal story would bring a beneficial perspective to the organization.
As a part of my involvement, I have assisted the Patient Care Council which helps families find dental care around the country. We have a big demand for financial assistance to help with funding dental care.
I have also enjoyed volunteering at Family Conferences, sharing my story, listening to families, doing dental evaluations at conferences, and helping to organize our Regional Family Conference in Dallas.
Our organization relies on family volunteers and donations to continue growing and supporting our mission. It is important for us to engage our community and increase our family participation and volunteerism.
Our biggest request is access to dental care and help with insurance and funding requests for dental costly treatment. It is exciting to see the development of several national treatment centers that will be multi-disciplinary centers where experts at the centers willing to consult with care providers across the country.
If someone has not attended one of our Family Conferences, this is a great way to get more involved and learn more about the syndromes. It is amazing to see the connections and relationships being made at the meetings.
I often hear about how families continue to stay in touch even years later. If someone is interested in hosting a fundraiser in their area, the NFED staff can assist with ideas and help. What makes a difference is the collective and combined efforts of many people.
I am a wife and mother now of a 4-year-old girl. From what we can tell, she is going to be missing some permanent teeth as well. She keeps telling people that she is going to be a dentist like her mom.
I want to encourage her and raise her to be a strong woman no matter what her challenges might be. Dental treatment has improved so much since when I was young. I would love to see a cure for all ectodermal dysplasias in my lifetime, so our future generations won’t have to face the struggles that I did and like so many of our families.
Editor’s Note: Would you like to volunteer with the NFED? Email Lea Richardson, NFED manager, community engagement, at firstname.lastname@example.org or call her at 618-566-6871. You can also learn more about volunteering on our website .
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