This summer marks the first time in our history that families affected by ectodermal dysplasias won’t gather for Family Conference. We know how important it is for you to be able to connect and learn and how much you all enjoy seeing other families.

When we canceled Family Conference because of the coronavirus, we brainstormed ways to take key components from this year’s Conference and make them virtual. Even though different communities are opening up in phases, we know that lots of you are staying at home more and looking for ways to connect.

Calling All Campers

We are thrilled to launch Kays’ Kids Camp and Teens Program – At Home Edition! Children ages 0-17 are invited to participate in this July camp. 

Camp Director Aubrey Vora and her team have planned fun and creative weekly activities for three age groups: Littles (0-4), Kids (4-11) and Teens (12-17).

Every Wednesday in July, campers will jump on a Zoom meeting with their age group. From crafts and scavenger hunts to story time and games, each week will be filled with fun things to do. Plus, your child will get to see and talk to other children in the sessions.

Aubrey Vora is this year’s Camp Director. She brings a life-time of experience having grown up attending Kids Camp at the Family Conference.

Get Creative

Is your child creative? They will love some of the summer challenges planned for Camp. They may want to enter the t-shirt design contest or create a Tik-Tok style video about how they stay cool.

Or, maybe they will draw a picture or sing for the Kids Camp Cabaret & Gallery Night on July 31. We want to celebrate their talent and creativity!

It’s open to both individuals affected by ectodermal dysplasias and their siblings. Camp is free but you must sign up each of your children to participate.

Learn More and Sign Up

Our camp team is also recruiting volunteers, age 18 and up, to help put on camp. Can you help out on a day or two?

Sign Up to Volunteer

Expanding Conference From Your Couch

Adults, we haven’t forgotten you! Programming at this year’s Family Conference was going to focus on families learning from one another and building support networks.

We have now added four new webinars to our Conference from Your Couch Webinar Series!

This series enables you to access free, educational presentations led by our experts. You can watch recordings of the three that are completed and learn more about the upcoming three here.

Syndrome Specific

The format for the new July webinars will be different than these educational webinars. These will be led by a different type of expert: families! Each webinar will focus specifically on one type of ectodermal dysplasia and last two hours.

Syndrome specific sessions are a perennial favorite among Family Conference participants. While different types of ectodermal dysplasias share some features, each type comes with specific issues that only others with that syndrome can understand.

With 100 different types of ectodermal dysplasias, it’s not possible – unfortunately – for us to offer webinars for all types. These four were chosen because they have larger numbers of affected individuals.

Sharing Emotional Support

These are the perfect opportunities for you to offer and receive emotional support that you and others may need. Knowing you are not alone is incredibly powerful!

Webinars will begin with two or three people briefly sharing their story. They may be affected by the syndrome or be a parent of an affected child. Afterwards, the discussion will open. You can ask questions, comment on a story or share your own experience.

Here’s the webinar lineup for July:

Webinar: Let’s Talk Goltz

(Focal Dermal Hypoplasia)
Thursday, July 9
7 p.m. CDT

Sign Up

Webinar: Let’s Talk EEC

(Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome)
Thursday, July 16
7 p.m. CDT

Sign Up

Webinar: Let’s Talk HED

(Hypohidrotic Ectodermal Dysplasia)
Thursday, July 23
7 p.m. CDT

Sign Up

Webinar: Let’s Talk AEC

(Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or Palate Syndrome)
Thursday, July 30
7 p.m. CDT

Sign Up

All webinars are free, and you must register to participate. We will NOT record these sessions, so you will not be able to watch a replay.

See You In July

We hope that you add these events to your summer calendar for July! It’s the next best thing until we can see you in person next summer in St. Louis for our 40th Anniversary Celebration and Family Conference!

If you have any questions, don’t hesitate to email me!

2 comments on “Spend Your Summer With NFED”

  1. 1
    Nardeen on June 22, 2020

    Thank you all for your great efforts and love …. it is making big difference in many people lives . So thank you again and god bless

    1. 2
      Jodi Edgar Reinhardt on June 24, 2020

      Thanks for the kind words, Nardeen! It’s our honor to help our families in any way we can! Jodi, NFED, Director, Marketing and Communications

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