15 Reasons to Attend Family Conference

I could list way more than 15 reasons why you join meet us in St. Louis this July. But, this list will get you started.

• Tour St. Louis:  Did you know St. Louis has cheese you can get nowhere else?

  

• Refresh and Recharge: Take a few days off from your busy schedule and relax and recharge your batteries. You will thank us for it!
• Rub Elbows With Others Who are Affected by Ectodermal Dysplasias: This is the best part of the Conference experience. You get to meet and share ideas with others. You never know. You may get to meet Carver, the author of Carver’s New Smile.
• Connect and Reconnect with Friends: Lifelong friendships and connections have evolved from our Family Conference. Dealing with ectodermal dysplasias can be very

  

  isolating, not only for those affected, but for parents of affected children. Many parents feel overwhelmed with everything that comes with the package.  At the conference, you will no doubt spark connections for a lifetime. Did you know a few of the families call it their family reunion, even though they aren’t really family?

• The Price is Right: Very affordable! We offer a less than $150 registration fee, discounted hotel rates for the conference and scholarships.
• Meet the Medical Experts– The National Conference offers the rare opportunity to learn from the experts on ectodermal dysplasias.  You will also receive a FREE dental evaluation.
• Surround Yourself with Affected Families & Individuals: For once, being affected by ectodermal dysplasia puts you in the majority. You’ll see people with your type of ectodermal dysplasia in the elevator and in the halls. You’ll see people with dentures, and misshapen hands and feet, along with thin hair. Kids will hold hands with others and feel comfortable. Through casual encounters, formal presentations, and in-depth conversations, you will feel it and see you are not alone. This, by itself, is a life-changing experience!
• Get Ideas: Some of the most effective treatments you will receive will be from suggestions you receive at the conference.
• Be-In-the-Know:You’ll hear all the latest in research, from the scientists themselves! You’ll learn what’s new, and how to get involved. Plus, you’ll find answers to issues like making special accommodations at school, how to spot an infection, or finding the best way to explain ectodermal dysplasias to a classroom or employer.

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  See Your Future: The conference offers the rare opportunityto talk with those ahead of your life stage. New parents with affected toddlers can meet happy and adjusted teens with ectodermal dysplasias. Young adults can talk with 30-somethings about what it’s like to go to college, get married, or nurse a baby while having ectodermal dysplasia. Adults can visit with seniors and find out what issues and solutions they’ve found for aging with ectodermal dysplasias.

• Inspire Others: Ectodermal dysplasias makes for people of dignity, generosity, and perseverance. Sharing your strength with other new parents, other affected people, and even the dermatologists or dentist can empower you.
• Have Fun: From dawn till dusk, and beyond, the positive energy of the conference is contagious. We smile nearly the whole time we are there! The sight of the children playing together in the childcare room makes me teary with joy.
• Meet the NFED Staff: Have you had the chance to meet all the NFED staff in person? I am sure you haven’t, since we have someone new.  All of their smiles light up a room when they see you & the other families.   You will have a chance to get to know the staff and to encourage them in the work they’re doing.
• New Activities Are Waiting for You in St. Louis:
  1. Music Therapy: Find out how music can soothe your soul and so much more.
  2. The Adult Perspective: Adults affected by ectodermal dysplasias will network and learn from one another as they discuss issues they face.
  3. Parenting Tips: Learn ways to help your children and teens understand their diagnosis.
  4. Kids and Teen Time: Kids and teens will attend special sessions geared for their age.

• You never know what the Family Conference Committee and I have up our sleeves and will surprise you with this year!

Other blogs you may want to read:

• Family Conference is Sort of like a Wedding.
• Greetings from the NFED
• Who Could Say “No” to Mary Kaye Richter?