By Lisa Jonak
My son Cory, was about 6 years old before he was officially diagnosed with ectodermal dysplasia during an NFED family conference in Collinsville, IL. Ironically, the NFED was basically located in our back yard.
I did not realize how lucky we were to have this resource so close. They helped us find a dentist close to our home, as Cory’s teeth were the most severe side effect of ectodermal dysplasia.
When Cory was 17, I started investigating having major dental work done to fix his mouth and smile. When Cory was graduating from high school, he applied for the NFED scholarship and was lucky enough to be chosen to receive one.
While he was a freshman in college, we were ready to start the dental plan to have Cory’s teeth fixed. Our dental insurance covered the maximum amount, but we were left with quite a hefty bill when all was said and done. After much consideration, I decided to fight my medical insurance to have them cover the remaining balance. Mary Fete (now Executive Director of the NFED) was a wonderful advocate for us in this process. After several months of going back and forth with my insurance company, I was victorious in my appeals.
Cory is now a biology major and is pursuing medical school next year. After his sophomore year at Mizzou (University of Missouri), he wanted to give back to the NFED for what they had provided him, and he completed an internship last summer.
In reality, the NFED continued to give to Cory. The experience he received last summer with working with the staff, being exposed to scientific board members and most importantly being around all the kids and families affected by ectodermal dysplasias during the family conference in Ohio, was so rewarding for him in many ways. Little did he know by trying to give back he was going to receive so much more.
During my interactions with Mary, she asked me if I would be interested in helping the NFED to secure a hotel site for the 2016 family conference in St. Louis. I spoke with my husband as I knew there would be a time commitment, and he was very supportive of the idea.
I loved the challenge of doing something new and different. I learned a lot and met some very nice people along the way. After I narrowed my search to the top five hotels in the area, Kelley Atchison (Director, Family and Community Programs) and I started making site visits, so I have gotten to know her quite well.
The experience, knowledge and NFED friends I have made along the way has been very rewarding. I’m so glad I did this, and my family and I plan to volunteer in preparing and hosting the 2016 conference in St. Louis. Volunteering can be contagious, and we plan to always be there for our NFED family!
Learn more about how you can volunteer for the NFED.
Other NFED Blogs of Interest:
Every Moment Has a Meaning by Cory JonakShare Your Story