The Fenoglio family of California enjoys a good adventure. Whether it’s exploring Alabama where grandma, Kathy Fodor, and extended family live, or finding ways to raise money and awareness for the National Foundation for Ectodermal Dysplasias (NFED), their close knit family loves doing things together.
Jon and Debbie Fenoglio have two sons, Jackson, 11, and Ben, 8. A dentist diagnosed Jackson with x-linked hypohidrotic ectodermal dysplasia (XLHED) at age two because he was missing so many teeth. You can read more about Jackson and his diagnosis story.
His inability to sweat creates the biggest challenge, Debbie says.
“Without sweat glands, you need to always ensure that you have resources to keep Jackson cool, and that those in charge of his care are aware of his inability to manage his temperature.”
This month, we are proud to spotlight the Fenoglios and “Grammy” Kathy for their volunteer efforts for the Foundation. The family has hosted several Facebook fundraisers. Debbie’s work group held a major event and designated all funds to the NFED.
We asked the family about their volunteer experience. Here’s what Debbie had to say.
Share a little about yourself and your family.
We love to travel and spend time together just as family. We love making new memories and going on new adventures. We always try to consider Jackson’s ectodermal dysplasia when going on our adventures, to make sure that he is the most comfortable and is able to make choices based on what he wants to do, rather than what he can do within limits.
Why are you passionate about the NFED?
We are passionate about the NFED because ectodermal dysplasia affects my son and Kathy’s grandson. We want to walk through this journey with him and make his and other members of our community’s tomorrows brighter.
When did you begin volunteering with NFED? What prompted it?
When your family is a part of a bigger family with a rare disorder, the only way to continue to fight for progress, acceptance, education and funding is by speaking out. Most of society wants to help when they have the information and education in how they can.
We started at an NFED Family Conference. Then, we decided to have some fundraisers over the years – Under the Roof Top being the biggest one – and our Facebook birthday fundraisers as smaller ones.
Why have you continued volunteering with NFED?
We volunteer to show Jackson and our entire NFED community that we are extremely proud, and wish to be a part of pushing forward towards new treatment discoveries and opportunities. Furthermore, we want to show that we can accomplish more by supporting and loving each other.
What do you think the role of a volunteer is? Why do you think it is important to volunteer for the NFED and those affected by ectodermal dysplasias?
We think the role of a volunteer is to show support, compassion. It is important to try to walk in each other’s shoes. We cannot ever really understand each other if we do not become invested in each other’s journey. No two people are alike, but if we volunteer with love and an open mind, we can accomplish so much more together then we can apart.
We think it is very important to volunteer for the NFED as they are our family, and you support your family. You stand up for the good of the whole, to not only make a difference, but to be the difference.
What was the most powerful moment you had while volunteering? What was the most challenging?
The most powerful moment for me in volunteering was when my Legal Administrators Group President, Jessica Daughtery, announced at our yearly conference that the charity that she had chosen to support during her tenure would be the NFED. Mary Fete, NFED’s executive director, was able to attend and provide a presentation. My colleagues were moved and wanted to know more information.
Jessica really could have picked anything to support and I was grateful she chose us. With being such a rare disorder and choosing us, she put us in front of high-level persons who had never heard of ectodermal dysplasias. The amount of support we received and the money we were able to raise, will be one of the things I am most proud of in my life.
The most challenging is seeing ectodermal dysplasia families struggle with the expense and lack of healthcare approval in meeting their child’s, and other family members’ needs. The insurance companies not authorizing dentures and families being denied continually, is utterly heartbreaking to me that we should have to fight for medical necessities that should be approved without a second thought.
Early intervention is key in our kids’ development, confidence, health and well being and to see kids at the conference not have what they NEED, because of our healthcare industry, is heartbreaking.
Would you recommend volunteering with NFED to others who are able?
Most definitely, we recommend volunteering. It is highly rewarding and you will not regret it. It will change you in the best way. You feel involved and connected with the NFED community. You contribute to a cause that you care about and use your skills. Everyone has something to offer.
What can others expect when volunteering with NFED?
Warm and supportive people who just want to go out into the world and do the best for our kids and adults. They will guide you and help you. You are not alone.
How do you plan to support the NFED in the future?
We would love to volunteer more, be able to get the word out about ectodermal dysplasias on even a grander scale. We’d like to hold another big fundraiser and keep spreading awareness by doing our Facebook birthday fundraiser(s). Lea has talked to us about being social media ambassadors…maybe!
Which volunteer event was your “favorite” or most impactful?
Definitely working the dental evaluations at the NFED Family Conference. To see the hope in the kids’ and the parents’ eyes, when a lot of them have never had answers. It was truly rewarding.
What have you learned/taken away from your experience?
Everyone’s journey is different. While you can offer support and suggestions, we need to remember that no two circumstances are alike, even with the same variation of the disorder. We need to lead with compassion and understanding. Be slow to speak and quick to listen. Sometimes, we do not need advice and sometimes, we just need someone to hold our hand and listen so we can let go.
Is there any other topic or point you would like to address that I have not already asked you?
Mental healthcare is a big one for us. As Jackson is the only member of our family, immediate and extended, that has ectodermal dysplasia, we want to make sure he’s properly supported and offered every tool that will help him thrive.
What was the most powerful moment you had while volunteering or advocating. What was challenging?
Seeing Jennifer Burrell, James and Keira’s mom, speak at the “Under the Big Top” fundraiser. We were so appreciative of them coming out and sharing their story. I believe it truly made a difference and it was through them and so many others including President Jessica Daughtery and Wendy Rice-Isaacs, who was our Committee Chair of Orange County ALA, that we were able to raise the most money by a CCW event in Orange County, California history.
One thing that would surprise someone to learn about you is…
I actually get quite nervous to speak in front of people. I am really a people person and yet, get me up in front of a group and I just want to hide.
What would you say to others who are thinking about volunteering for the NFED?
“The heart of a volunteer is not measured in size, but by the depth of the commitment to make a difference in the lives of others.” And “The smallest act of kindness is worth more than the grandest intention.” – Oscar Wilde
All of us at the NFED are grateful to the Fenoglio family and Kathy Fodor for their commitment to our important mission. If you would like to step up and volunteer for the foundation, just click on the link below.Volunteer