Our mission to provide information, events and resources for families affected by ectodermal dysplasias is all driven by the desire to improve your wellbeing and health. We strive for the National Foundation for Ectodermal Dysplasias to be the safe haven where you can find not only answers but compassionate support.
Last week, the World Health Organization characterized the coronavirus (COVID-19) as a pandemic. Individuals with chronic health conditions are at greater risk for more severe disease with COVID-19. This includes people affected by many types of ectodermal dysplasias. We have been watching this issue closely and recently published an article about coronavirus and the risks associated with ectodermal dysplasias.
For example, respiratory mucous is abnormal in a number of the ectodermal dysplasias and there is a significantly greater prevalence of asthma in individuals affected by hypohidrotic ectodermal dysplasia (HED). Individuals with other types have compromised immune systems.
Based on this, our Scientific Advisory Council, staff and Board of Directors unanimously agreed that we must cancel our 2020 Family Conference in Washington D.C., June 22-24 for the safety and health of our families.Learn More about Conference Cancellation
You may wonder why we are canceling a June event when it’s only March. The situation of this worldwide health threat keeps evolving and we’re not certain where things will be in June. Right now, the Centers for Disease Control and Prevention recommendations that people who are at higher risk avoid crowds. Based on this recommendation, we see no other option but to cancel.
If we wait a few more weeks before deciding to cancel, the Foundation will lose even more significant financial resources with vendor contracts than we are losing now. It’s important that we be good stewards of the funds that have been donated to the NFED. Plus, we don’t want any more families to lose money because of canceled flights.
We didn’t make this decision lightly. For 39 years, the Family Conference has been the highlight event of our year as an ectodermal dysplasias community. It’s hard to imagine even for us, the staff, that this event won’t happen. We know that families look forward to it and we share your sadness! It gives us even more reason to be excited about getting together next summer with all of you for our 40th Anniversary Celebration and Family Conference in St. Louis, Missouri, July 15-17, 2021.
Anyone who has registered for the Family Conference will receive a full refund for their registration fees by the end of March. You can learn more about that here.
Families, we encourage you to sign up and attend Conference from Your Couch, our 2020 webinar series. This year, we are offering six free webinars which you can watch to learn more about the ectodermal dysplasias from our experts and ask questions. While one happened last month, you can access the recording of it.Explore Free Webinars
Advocacy Day on Capitol Hill Is Still Happening – Virtually!
This year, we had planned to have families call on Congress on Wednesday, June 24 to support the Ensuring Lasting Smiles Act. While the in-person meetings are canceled, we are excited to have virtual meetings!
You can join others from your district and/or state and meet with members of Congress (or members of their staff) virtually. If you sign up to participate, you will access your schedule using a mobile app and join the meeting by phone.
By going virtual, we hope to have even more families and advocates participate in this free event.
Learn more and how you can participate.Register for Virtual Advocacy Day
Supporting you. Supporting each other.
Certainly, no one could have anticipated that we’d be in this situation. We hope you understand our decision and know that you and your family’s health are our top priorities.
If you have any questions, don’t hesitate to call me or the staff at the office at 618-566-2020. We would be happy to explain things or listen.
Until then, please be sure to follow the guidance on prevention and risk for coronavirus and ectodermal dysplasias. We hope that you and your family stay healthy and safe!