New dates. New format.
Attend the 2020 National Foundation for Ectodermal Dysplasias (NFED) Family Conference in Washington D.C. to connect with other families and build your support network. You can participate in activities that enable you to meet others who share your syndrome or concerns or live in your area.
You’ll also learn from family experts who will discuss their experience with ectodermal dysplasias. These special sessions are designed for you to learn from their wisdom, ask questions and discover you are in good company! You’ll have an opportunity to break into small groups to discuss what it’s like living with ectodermal dysplasias. Explore and share your feelings in a safe place, where others understand.
Finally, empower yourself by learning how to confidently tell your story and be your own best advocate – at home and on Capitol Hill. On Wednesday, we will storm Capitol Hill together! You will be a part of a team and visit your respective legislators to ask for their support of the Ensuring Lasting Smiles Act. We will schedule your legislative meetings in advance.Register Now Download Family Conference Brochure
Monday, June 22
6 p.m. – 8 p.m. – Registration
Tuesday, June 23
8 a.m. – 9 a.m. – Registration
9 a.m. – 9 p.m. – Family Conference Programming
Wednesday, June 24
7 a.m. – 7:30 p.m. – Advocacy Day on Capitol Hill, Dinner, Recap
Kays’ Kids Camp and Tweens/Teens Program
Sponsored by Louis J. and June E. Kay Foundation
Kays’ Kids Camp is available for children ages infant-11 years-old. The Tweens/Teens Program is for children 12–17 years old. Both programs include fun, age-appropriate workshops, entertainment, arts and crafts, and social time with others who are affected by ectodermal dysplasias or who have siblings that are. Tweens/teens who register for their program will participate in off-site activities.
Any child, infant – 11 years old, will also need to be registered with the child care company, A Helping Hand. Please follow the instructions below to register your children for your event:
- Visit: www.ahelpinghandevents.com and log in or register for a new account.
- If it’s your first time visiting, you will be prompted to fill out a profile with your child(ren)’s information
- Go to your Event Registration tab and enter our GROUP ID NUMBER: H9KE
Event Pre-Registration for childcare will close at 11:59 p.m. EST on Tuesday, June 16, 2020, so please be sure to pre-register your children as soon as possible! If you have questions, please feel free to contact A Helping Hand directly at 757-416-6886.
Advocacy Day on Capitol Hill
This year, Advocacy Day is being held in conjunction with the Family Conference. You and other families from your state will meet as a team with your senators and representative or their staff to ask for their support of ELSA. We will provide transportation from the Sheraton Pentagon City to Capitol Hill in the morning and back to the hotel at the end of the day. Our team will handle all of the meeting scheduling and logistics for you. All you have to do is show up and tell your story!
Our advocacy team of families will train you on what to say and what to expect. If this is your first time advocating and are nervous and unsure about talking, you can let the other advocates on your team lead the discussion. You and your children’s presence in the meeting will make a big impact. In the past, families who were initially nervous found that after the first meeting, they felt more comfortable sharing their story. They realized that the staffs were friendly and welcoming and made the process easier. It’s an empowering experience!
Here are some resources to help you prepare for your visit to Capitol Hill.
- What to Expect When You Visit Your Legislator at Day on the Hill
- Who will you meet on Capitol Hill?
- Should Kids Attend NFED Advocacy Day on Capitol Hill?
Sheraton Pentagon City
900 S. Orme St.
Arlington, VA 22204
This upscale hotel is a 4.2 mile-drive from the White House and a 5.2-mile drive from the iconic United States Capitol.
Book your room online to get our discounted rate as part of our room block. Or, call 1-800-325-3535, ask for Sheraton Pentagon City Hotel, then ask for the NFED Family Conference block or use hotel mini code “NFE”. (Yes, it’s correct that the mini code does NOT have a D).
If you want to reserve rooms outside of the block dates, please contact the Sheraton by phone. Room block deadline is Thursday, June 4. Room rate is $159 plus taxes. Reserve your room early. The rate will not be available when our room block is full.
How To Register for Conference
Register online on or before Monday, May 11.
Includes Monday, hors d’oeuvres; Tuesday, continental breakfast, lunch and dinner; Wednesday, continental breakfast, lunch at Capitol Hill and dinner; Kays’ Kids Camp and Tweens/Teens Program. Each paid registration will receive a Conference t-shirt.
Adult (18 and older) – $100
Children (birth–17) – $75
No late registrations accepted.
Registration Cancellation Policy
If you register but are unable to attend the Family Conference, the NFED will refund your total conference registration fees less a $30 administration fee. There will be no refund allowed on or after Friday, May 29.
Bev Meier’s Golden Ticket Fund
We will award travel stipends this year rather than our traditional scholarships. This means, each family pays their registration fee. If awarded a travel stipend, you will receive the check at the on-site registration. The travel stipends will be determined by the number of individuals in your family attending and distance. Funding is limited. Apply online by Friday, February 28.
Contact Kelley Atchison at firstname.lastname@example.org or 618-566-2020.
The NFED Family Conference is not intended as a substitute for medical advice. Only a healthcare provider with a full medical history may determine the proper treatment options. Opinions shared in the sessions do not necessarily reflect those of the NFED. Conference topics are subject to change.