2018 Family Conference Program

Friday, July 6 and Saturday, July 7, 2018

Table of Contents Welcome Letters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2-3 Thursday, July 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Friday, July 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Saturday, July 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 NFED Staff and Board of Directors . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Kays’ Kids Camp . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Kays’ Teens Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Sponsors and Donors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Conference Speakers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

*Times and sessions may vary.

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From the Director Greetings!

Welcome to the National Foundation for Ectodermal Dysplasias’ (NFED) 37th Annual Family Conference. It’s great to be back in the Pacific Northwest.

We’re excited to meet first-time conference attendees and welcome back past attendees.

We are trying something new this year! Conference is scheduled differently as we are having two full days. These days are packed full of educational opportunities, fun and games but most of all, just being together as a family. I know you will find these two days memorable and one of the most important events in your lives.

You have the opportunity to learn from the world’s leading experts in ectodermal dysplasias and to develop life-long friendships and support networks.

Besides the scheduled activities here at the Family Conference, take advantage of the opportunity to talk to all of our experts and to chat with other families. These days at the Conference are always so much fun, but they can also be overwhelming and emotional. Please reach out to an NFED staff member, or a Family Liaison for support and help. Until you get to know us, you can recognize us by our shirts. We are all here to support you, to get to know you and to make sure you have a fabulous conference.

Thank you for spending your holiday weekend with us. I want to meet and get to know you and your family better over the next two days, so please come talk to me. It will make my heart very happy to greet you personally and meet your children.

Let’s get this party started!

Sincerely,

Mary Fete, MSN, RN, CCM Executive Director

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Welcome to Oregon!

You will find Portland a great place to visit. Straddling the Willamette River, the city embraces its waterfront with pedestrian ways along both river banks coursing through downtown. The majestic beauty of Mt. Hood is visible to the east and the mighty Pacific Ocean is just over an hour to the west. The nearby Columbia Gorge will lure you to its series of waterfalls cascading down basalt escarpments and feeding the massive Columbia River.

But this natural beauty and urban vibe is not why you’re here. You’re here for the NFED’s 2018 Family Conference!

Those of you from the region or from other places around the world will learn the whats and whys of our ectodermal dysplasia syndromes: •A re you new to the NFED and the many variations of ectodermal dysplasia? Listen as Dr. Clayton Butcher provides an overview of the multitudes of expression within the syndromes. Join the Family Panel session as they share personal stories about their lives with ectodermal dysplasia and ask them questions about yours!

•C urious about how your genetic makeup determines what teeth you’re missing, or why you don’t sweat, or how come you were born missing fingers and toes? Attend the Genetics session led by Dr. Virginia Sybert!

Other sessions will touch on scientific research into our conditions.

•W ant to learn more specifics about your particular ectodermal dysplasia syndrome and your individual issues? We have dental, eye, and dermatology sessions for you. There’s also the Ask the Exerts sessions where they can provide you guidance in living with ectodermal dysplasia.

In short, the Family Conference will provide all these resources and more in this wonderful place called Portland!

As a person born with the ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. I’ve have found that my condition has led me down a road that most do not travel. I learned of the NFED later in my life, at age 50.

That first conference I attended in Salt Lake City in 2002 was transformative for me, filling a void in my life that I was not aware was there. As chair of the Family Conference Planning Committee, I am so darn proud that our team has been able to facilitate this conference. The planning committee, the many professionals, our wonderful volunteers and the fabulous NFED staff, have been, and will be, your Bridges to Inspiration. It is our sincere wish that you and your family leave this Family Conference energized by what you have learned and, yes inspired, by people like you, living their lives to the fullest!

Jack Kriz With acknowledgment to planning committee members Carrie and Derek Conklin and Matt Nehrkrom and the fabulous NFED staffer, Kelley Atchison!

2018 Family Conference Committee Carrie and Dr. Derek Conklin, Jack Kriz, Matt Nehrkorn and Kelley Atchison

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Thursday, July 5, 2018 Early Registration 7:00 p.m. – 8:30 p.m.

Friday, July 6, 2018 Registration 8:00 a.m – 9:30 a.m.

Overview of the Ectodermal Dysplasias

All sessions will be in the Pacific Northwest Ballroom, unless stated otherwise.

1:30 p.m. – 2:30 p.m.

Clayton Butcher, MD, University of Missouri, Columbia, Missouri

Conference Welcome

Genetics 101

10:00 a.m. – 10:45 a.m.

Mary Fete, MSN, RN, CCM Executive Director, NFED

Getting To Know You Activity 10:45 a.m. - 11:30 a.m.

Lunch 11:30 a.m. – 1:00 p.m.

Enjoy your lunch while sharing your experiences with other attendees.

Dental Screenings (By Appointment Only) 11:30 a.m. – 2:30 p.m.

Ross Island/Morrison

2:40 p.m. – 3:40 p.m.

Virginia P. Sybert, MD, University of Washington, Seattle, Washington Dr. Sybert will explain genetics and the different ways ectodermal dysplasias can be inherited.

Family Panel 3:50 p.m. – 5:00 p.m.

Adults affected by ectodermal dysplasias and family members will answer your syndromerelated questions.

Family Dinner 5:30 p.m. – 6:30 p.m.

Friday Night Fun 6:30 p.m. – 8:00 p.m.

After dinner, follow the signs and join us at Holladay Park for an evening outside. There will be family- and kid-friendly activities. Let your mind and body rejuvenate after a long day of participating in workshops.

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Notes

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Saturday, July 7, 2018 All sessions will be in the Pacific Northwest Ballroom, unless stated otherwise.

plans for Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 18.

Group Photo — Lobby

Dermatology Concerns and Treatments – Ross Island/Morrison

8:00 a.m.

Wear your conference t-shirt for the annual Family Conference Photo. Location to be determined.

Ophthalmology Concerns and Treatments 8:30 a.m. – 9:20 a.m.

Richard Lewis, MD, MS, Baylor College of Medicine, Houston, Texas Lauren Blieden, MD, Baylor College of Medicine, Houston, Texas Drs. Lewis and Blieden will discuss eye concerns related to the ectodermal dysplasias and potential treatments.

Dental Session – Sequence of Care 9:30 a.m. – 11:15 a.m.

Clark Stanford, DDS, PhD, University of Illinois at Chicago, Chicago, Illinois J. Timothy Wright, DDS, MS, University of North Carolina at Chapel Hill, North Carolina Drs. Wright and Stanford will discuss the stages of dental care from the first set of dentures to dental implants.

Lunch and Learn (Advocacy and Insurance) 11:30 a.m. – 1:00 p.m.

Becky Abbott, MPH Public Health Consultant and Co-Chair, NFED Family-Driven Legislative Advocacy Committee During our working lunch, Mrs. Abbott will give an update on future legislation that will cover treatment expenses related to ectodermal dysplasias symptoms. She will briefly share

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1:15 p.m. – 2:15 p.m.

Virginia P. Sybert, MD., University of Washington, Seattle, Washington Dr. Sybert will discuss concerns and treatments related to the hair, nails and skin.

School Advocacy Working Session – Hawthorne/Sellwood 1:15 p.m. – 2:15 p.m.

Local experts will discuss the benefits and laws associated with 504 plans. Families will have an opportunity to meet one–on-one with local education specialists.

Ask the Experts – Ross Island/Morrison 2:30 p.m. - 4:00 p.m.

Have a question that doesn’t relate to a session topic or need a one-on-one discussion with one of the medical or dental experts? This is the time to ask! Drop by Ask the Experts. Tables will be marked with the expert’s name and area of specialty.

Liaison Regional Stations – Hawthorne/Sellwood 2:30 p.m. - 4:00 p.m.

Speak with NFED Family liaisons and other families from your state one last time before the Conference Finale.

Grand Finale

4:30 p.m. – 5:00 p.m.

Mary Fete will lead us in our farewell session.

Don’t miss the announcement for upcoming Conference locations.

See you next year!

Notes

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NFED Staff Mary Fete, MSN, RN, CCM Executive Director 2002-present

Jodi Edgar Reinhardt Director Marketing & Communications 1994-present

Kelley Atchison Director Family & Community Programs 2001-present

Kayla Hollenkamp Administrative Assistant 2015-present

Brittany Campbell, M.P.A., CFRE Director Development 2015-present

Lea Richardson Manager Community Engagement 2011-present

Board of Directors George Barbar – Co-President Ruth Geismar – Co-President Roy Moffitt Karl Nelsen, PA-C, M.S. - Secretary Mary K. Richter - Honorary

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Keith Throm Marianne Vermeer Anil Vora - Treasurer J. Timothy Wright, DDS, MS

Activities (Designed for children ages infant – 8th grade)

Thank You to our Sponsors and Donors!

A separate schedule will be available at Kids Camp registration.

Louis J. and June E. Kay Foundation

Kays’ Kids Camp

Kays’ Teens Program (Designed for high school students 9th - 12th grades) Teens and chaperones will visit local attractions on Friday and Saturday. Transportation, entry fees and lunch are covered by registration fees and a generous donor.

A separate schedule will be available at registration.

Make sure that you’ve signed a permission slip for your teenagers. They won’t want to miss the fun.

Straumann Corporation Straumann USA Mildren Design Group, PC Sandy Family Dentistry Gene DX Schiedler Family Nursery, Inc. ARC Document Solutions AADR/FNIDCR Fuller Hair, Inc Kelley’s Flying Service LLC Simplot Partners Eta Alpha Chapter, Delta Theta Tau Sorority Lambda Alpha Chapter, Delta Theta Tau Sorority Xi Epsilon Chapter, Delta Theta Tau Sorority

A special thanks to our dental experts for conducting dental screenings.

Dr. Anton Conklin Meadowlark Dental Kelso, Washington Dr. Derek Conklin Sandy Family Dentistry Sandy, Oregon Dr. Sam El-Ebrashi Clear Choice Dental Implant Centers Portland, Oregon Dr. Mike Malmquist Malmquist Oral and Maxillofacial Surgery Portland, Oregon Dr. Clark Stanford University of Illinois at Chicago Dr. Tim Wright University of North Carolina School of Dentistry

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Conference Speakers Becky M. Abbott, MPH Public Health Consultant Co-Chair, NFED Family-Driven Legislative Advocacy Committee

Ashley Lindsay, MS Special Education Instructional Facilitator Newberg Public Schools

Lauren S. Blieden, MD Assistant Professor Adult & Pediatric Glaucoma Cullen Eye Institute Baylor College of Medicine

Clark D. Stanford, DDS, PhD Professor and Dean, College of Dentistry University of Illinois at Chicago

Clayton J. Butcher, MD Assistant Professor Internal Medicine and Pediatrics University of Missouri Health Care

Shannon Stueckle Assistant Professor, MAT Program George Fox University

Paula Kriz, Retired Special Education Assistant

Richard Alan Lewis, MD, MS Professor, Departments of Ophthalmology Medicine, Pediatrics, and Molecular and Human Genetics Baylor College of Medicine

PROUD TO SUPPORT THE NFED AND THE FAMILES THEY SERVE

Virginia P. Sybert, MD Clinical Professor Division of Medical Genetics Department of Medicine University of Washington J. Timothy Wright, DDS, MS Bawden Distinguished Professor Department of Pediatric Dentistry University of North Carolina School of Dentistry

Supporting NFED in their quest to help children and find cures for ectodermal dysplasias.

5320 West Main St Belleville, IL 62226 618-277-9800 GARY L. KRAUSS Business Consultant and Certified Public Accountant

FAIRVIEW HEIGHTS KIWANIS CHARITIES FOUNDATION

P. O. BOX 3064, FAIRVIEW HEIGHTS, IL 62208

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Sandy Family Dentistry is proud to serve as a local family dentist in Sandy, Oregon.

With Dr. Derek Conklin, DMD and our team of hygienists and specialists, our goal is to provide all of our neighbors with affordable quality dentistry under one roof for the entire family.

Visit us today!

17471 Shelley Ave Ste A, Sandy, OR 97055

(503) 668-4655

www.sandyoregondentist.com

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Genetic Testing For Ectodermal Dysplasia Syndromes GeneDx is a leader in genetic testing for rare hereditary disorders. Our mission is to make clinical testing available to people with rare genetic conditions and their families.

Using our custom testing platform, XomeDxSlice, we offer a comprehensive test containing ALL of the known genes and several candidate genes for ectodermal dysplasia syndromes, XomeDxSlice- Ectodermal Dysplasia.

XomeDxSlice- Ectodermal Dysplasia (58 gene panel) • Sequence analysis of 58 genes that cover all ED disorders CDH3, CHUK, COL11A1, DKC1, DOCK8, DSP, EDA, EDA2R, EDAR, EDARADD, ERCC2, ERCC3, EVC, EVC2, FOXI3, FRAS1, FREM1, FREM2, GJB2, GJB6, GRHL3, GTF2H5, HR, IFT122, IKBKG, JUP, KAT6B, KLF4, KRT1, KRT14, KRT16, KRT85, KRT9, LEF1, LIPH, LRP6, MBTPS2, MSX1, NECTIN1 (PVRL1), NECTIN4 (PVRL4), NFKB1, NFKBIA, ORAI1, PIGL, PKP1, PLCD1, PORCN, REL, RELA, RELB, SMARCAD1, TP63, TRAF6, TWIST2, WDR19, WDR35, WNT10A, ZNF750

• TAT: 8 weeks

For more information, call 301-519-2100 or visit www.genedx.com

207 Perry Parkway Gaithersburg, MD 20877 T 1 888 729 1206 (Toll-Free), 1 301 519 2100 • F 1 201 421 2010 • E genedx@genedx.com • www.genedx.com © 2017 GeneDx. All rights reserved. 05/17

Advertisement in NEFD conference booklet 2017.indd 1

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5/31/17 12:17 PM

Schiedler Family Nursery welcomes the NFED Family Conference to Portland, Oregon!

Selling to garden centers, re-wholesalers and landscape professionals; we at Schiedler Family Nursery strive to provide the highest quality plants locally grown in the Northwest.

13258 Portland Rd. NE Gervais, OR 97026 Office Phone: 503-792-4469 Email: info@schiedlernursery.com

Fax: 503-792-3774 Web: www.schiedlernursery.com

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Thank you to the NFED for supporting so many families throughout the country!

Thank you to the NFED Karen S. McAndrew DMD, MS for supporting so many families throughout the country!

Karen S. McAndrew DMD, MS

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Continuing to Climb Straumann and NFED have been empowering smiles together for over 10 years. straumann.us

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www.NFED.org • info@NFED.org • 618-566-2020 6 Executive Dr., Ste. 2 • Fairview Heights, IL 62208-1360

2018 conference sponsored by: