Grab your friends and family for a fun-filled event to end the summer!
The National Foundation for Ectodermal Dysplasias (NFED) is hosting a FREE Virtual Family Trivia and Research Celebration Event on Saturday, August 28, at 6:15 p.m. CST.
Well-known magician, Jon Dorenbos, will begin the festivity with 15 minutes of magic! You may know Jon from his 14-year NFL career. Or, perhaps you saw him as a magician who competed on America’s Got Talent. You are going to be amazed and entertained by his incredible magic!
The virtual trivia fun begins at 6:30 p.m. CST. You will get to play five rounds with five questions in each round. Midway, there will be a Fund-a-Need for ectodermal dysplasias research. Finally, everyone is invited to the Zoom After Party where the entertainment will continue.
To participate, you must register. Visit our Virtual Trivia page to learn more, register, donate or sponsor the event.Virtual Family Trivia
Life is Magic
Here’s a little more about our magician! Jon is a former American football long snapper. He played for the Tennessee Titans and Philadelphia Eagles, with whom he played 11 seasons and played in 162 consecutive games. After getting traded to the New Orleans Saints in the 2017 preseason, they discovered that Dorenbos had an aortic aneurysm that required immediate open-heart surgery and ended his football career.
Jon has since recovered and is doing well. Dorenbos had been an amateur magician since age 13 and decided to make it his new career as a professional magician and motivational speaker.
In 2016, Jon was a finalist on season 11 of the television program America’s Got Talent, performing his magic acts. He finished in third place for the season.
Jon says he is looking forward to making our event a success! He is donating his time in honor of those affected by ectodermal dysplasias and in honor of one of his best friends’ son who has x-linked hypohidrotic ectodermal dysplasia (XLHED).
The Planning Crew
Like everything else we do, we recruited a great group of volunteers to help us plan and execute this new event. The Virtual Family Trivia and Research Celebration Committee has been working diligently to make this fun-filled event free to all families and friends of the NFED.
Let’s meet our team!
Suzanne lives in Pennsylvania with her husband, Will. She is wholeheartedly enjoying retirement from being an educator and loves to travel. She has two adult children, Caitlin and Tyler. Both Tyler and Suzanne are affected by ectrodactyly-ectodermal dysplasias-clefting (EEC) syndrome.
In 2019, Suzanne and Caitlin ran the Disney Princess Half Marathon with sponsorship donations benefiting the NFED. She loves being on the Virtual Family Trivia and Research Celebration Committee and encourages everyone to register.
“Let’s have some fun! Fun creates enthusiasm and energy. Get your family and friends together and register.”– Suzanne
Debbie lives in California with her husband, Jon, and their two sons, Ben and Jackson. Jackson is affected by XLHED and received his first set of dentures in 2013 at age four. Debbie is a legal administrator and worked with the Orange County Association of Legal Administrators (OCALA) Chapter on a very successful fundraising event “Under the Big Top: A Night of Giving Hope,” with all proceeds donated to the NFED. Debbie was instrumental in acquiring our talented magician, Jon Dorenbos!
“I knew that I would do absolutely everything I could to bring awareness and funding for those affected by ectodermal dysplasias and the NFED.”– Debbie
Kathy is Debbie’s mother-in-law and lives in Alabama. She has two adult children–a son, Jon, and a daughter, Leslie, and four grandchildren. Kathy is retired after 30 years in the medical field as a registered nurse first assistant (RNFA), RN OR charge nurse and interim director of the OR in California and Alabama. She helped Debbie in 2016 with her NFED fundraising event which was a huge success. Kathy mentioned that “even though we’re grown up, we never should stop having fun. The pre-trivia magic show is a must see, so get registered ASAP.”
“There is not a day that goes by that I don’t thank God for filling my life with the love and joy of being a mother and grandmother. I couldn’t be happier.”– Kathy
Karl has been a member of the NFED family since he was 13 years old. He and his wife, Nancy, live in Minnesota with their children, Andrew, Abby and Samantha. Karl and Samantha are both affected by ectodermal dysplasia.
He’s a physician assistant in interventional radiology at a large community-based hospital system. Karl is also the President of the NFED Board of Directors and serves on several subcommittees including the Virtual Family Trivia and Research Celebration Committee. Karl strongly believes that it is a very exciting time for our organization.
“There’s exciting research, exciting advocacy – ELSA, and an exciting 40th anniversary and Family Conference next year!”– Karl
The Nelsen family will host their 6th Minnetonka 5K on Sunday, September 19.
Brandon resides in Montana with his wife and four daughters. He loves skiing, surfing, sailing, and all things outdoors. He works on technology startup projects and in nonprofit development.
His younger brother has ectodermal dysplasia which led to his involvement with the NFED. He serves on the NFED’s Development Committee and Virtual Family Trivia and Research Celebration Event Committee.
His first online trivia experience was only a couple weeks ago, and he says it was AMAZING! Brandon highly encourages everyone to sign up. He promises you won’t be disappointed! Brandon shared one of his favorite quotes:
“An adventure is only an inconvenience rightly considered. An inconvenience is only an adventure wrongly considered.”
― G.K. Chesterton
We are incredibly grateful to this committee for their hard work and great ideas!
Don’t miss out on the fun these wonderful committee members have planned for August 28. Register today! It’s free. If you have any questions, please email me or call me at 618-566-6871.Register for Virtual Trivia