If you have been a part of the National Foundation for Ectodermal Dysplasias (NFED) for any length of time, you know that the annual Family Conference is our big event of the year! It’s three days of magic each summer when we come together as an ectodermal dysplasias community.
Families travel from across the U.S. and the world to learn, connect and have fun! There’s not anything quite like it.
This is why canceling our Family Conference this past summer because of the pandemic was so heartbreaking. It was the first time in 39 years we had to do that.
Our Ongoing Reality
Now, the pandemic continues and the Centers for Disease Control and Prevention (CDC) is predicting surges in the number of new cases as we head into the winter. We simply don’t know when to expect an end to this reality.
According to Operation Warp Speed, their goal is “to produce and deliver 300 million doses of safe and effective vaccines with the initial doses available by January 2021.” But, we know that not everyone will have access to the vaccine immediately while others may choose not to get the vaccine.
Since this is a new virus, no studies have been done to research the effects of COVID-19 for people affected by ectodermal dysplasia. However, if you have respiratory issues or compromised immune system because of ectodermal dysplasia, you are at higher risk of a more severe infection.
We reviewed these facts and consulted with the professional advisors on our Scientific Advisory Council and Board of Directors to discuss whether we should host the 2021 Family Conference next July.
Looking to the Future
Based on what we know today, November 9, we don’t feel it would be safe to have our families gather together. Therefore, it is with heavy heart, that we are postponing the 2021 Family Conference in St. Louis to 2022. It will be held at the DoubleTree by Hilton Hotel in Chesterfield (a suburb of St. Louis) on July 14-17, 2022.
Certainly, this is not news that any of us in the NFED family want to hear. Two years without a Family Conference? That just can’t be! But, it is the only responsible thing for the Foundation to do. Your health and safety matter. We can’t – and won’t – risk it.
Our foremost priority is always to provide ways for you and your family to connect with other NFED families in a safe environment. We will wait until the pandemic subsides and the experts feel it is once again prudent to gather in groups.
Why decide now?
You may wonder why we decided to postpone now when the event is eight months away. We have a responsibility to our families and donors to be good stewards of our resources – both financial and human.
Besides caring for our families’ health, we also have an obligation to consider the financial resources of our families and the foundation. Families often book their flights to Conference well in advance. We don’t want you to lose money in doing so. Also, while the NFED was able to recoup our money this year when we canceled the Conference in April, we couldn’t afford to risk losing thousands of dollars this year if we waited to cancel at a later date.
Planning a Family Conference takes an extraordinary amount of hours for our entire staff. By making the decision now, staff will not invest six months planning an event that ends up being canceled. Instead, staff will use that time to better support families, create virtual experiences, advance research and work to get the Ensuring Lasting Smiles Act passed.
Just think about the celebration we will have when we can gather for that 2022 Family Conference! In fact, we’ll have double cause for celebration. The NFED has its 40th anniversary on Dec. 24, 2021. Instead of celebrating the anniversary throughout 2021 as we have done in the past, we’ll kick it off on the actual anniversary and conclude with an extraordinary gala at the 2022 Family Conference!
2021 Webinar Series – Conference from Your Couch
You may not be able to attend Family Conference in person next year. But, you and your family can take advantage of several virtual experiences the Foundation will offer.
Our expanded webinar series, Conference from Your Couch, will offer eight different educational and support sessions that you would normally attend at a Family Conference. They will be on Zoom like the webinars this year.
However, sessions will be held as meetings where you can choose to participate by video or not. This allows you to “see” other participants and unmute to ask questions and share your experiences when prompted. This enables the webinars to be more interactive and give you a way to connect with others and the presenter. Some of the sessions will have breakouts where you may meet in small groups or by your particular syndrome.
Look for more details on this series in your mailbox in early January.
What about the kids and teens?
Your kids and teens affected by ectodermal dysplasia and their siblings will once again be able to participate in the Kays’ Kids Camp At-Home Edition in July. This all virtual and interactive experience will provide age-specific programming in a fun way. We will announce more details in early 2021.
Onward, Together
Our staff, Board of Directors and members of our Councils share your disappointment and sadness that we can’t yet meet safely in person. Seeing you all each summer is the highlight of our year!
Until we meet again, please follow the CDC guidelines to keep you and your family safe: wear a mask, wash your hands often, socially distance.
Know that all of us at the NFED remain committed to being here for you as a source of support and accurate information. If you need help or just want to talk, give us a call or send us an email. We’re here. Supporting you. Supporting each other.
Learn more about how to stay safe and informed about the coronavirus.
I know this was not an easy decision to make. I want to personally thank the NFED staff and board for striving to be good stewards of time and resources. Thank you for considering the needs of all of our families. We love y’all.
You are so right…it was incredibly hard – and heartbreaking. We hated having to postpone. But we hated the thought of putting any families at risk more. Thank you for understanding! We love you all right back. ~ Jodi, NFED, Director, Marketing and Communications
I am from Uganda and trying to start something to support families, would love to be a part of this a d learn more from what you are doing. may I have some contact that can be helpful.
Thank you for asking for more information. You can register with the NFED at https://nfed.org/join-us/. You can also contact our office at info@nfed.org with questions.