NFED 40th Anniversary Celebration Booklet

Celebrating 40 Years!

We thank our CHAMPION SPONSOR

The Louis and Gladyce Foster Family Foundation

We thank our CHAMPION SPONSOR

The Vora Family

Dear friends,

For 40 years, the National Foundation for Ectodermal Dysplasias (NFED) has been the recognized leader and trusted source for the ectodermal dysplasias community around the world. We celebrated this major milestone throughout 2022 with our theme of Deep Roots, Strong Branches. Our yearlong celebration of our first 40 years has come to a close and we thank you for being a part of it.

The Foundation began on December 24, 1981 when 12 brave and determined families envisioned a better future, one filled with better information, resources and connections. This year, the NFED made significant progress on many fronts:

• A clinical trial to evaluate the first in-utero treatment for the most common type of ectodermal dysplasia launched in Germany last November. In preliminary studies, babies affected by x-linked hypohidrotic ectodermal dysplasia who received the prenatal treatment developed normal sweat glands and had other improved symptoms! Families in the United States can now participate in the trial at a clinical site which opened at Washington University in St. Louis. We are proud to have begun and fostered this research for the last four decades. If successful, the treatment would be the first of its kind and be available on the market as early as 2026. Amazing!

• The U.S. House of Representatives voted on and passed the Ensuring Lasting Smiles Act (ELSA) in April. The NFED initiated this federal legislation which will mandate health insurance companies to pay for the medical and dental care of all congenital anomalies, including ectodermal dysplasias. We were disappointed, to say the least, that ELSA didn’t get made into law yet but we are determined to keep advancing it in the next Congress.

• It was pure joy when our Family Conference returned in July after a three-year hiatus caused by the pandemic! We welcomed more than 250 people from all over the country with open arms. Families were jubilant to be together again. Connecting families has always been at the very heart of our mission. Its importance has never been more clear than after the last few years of not being able to do so. It’s simply magical when our community comes together.

Our hearts broke when NFED founder, Mary K. Richter died in November. She was the pioneer with a big heart who led our organization for its first 30 years. She willed it into being and worked relentlessly to help families not only with ectodermal dysplasias but all rare conditions. She was elated to have attended the Family Conference and 40th Anniversary celebration in July. Seeing all of you meant the world to her. In her last days, she shared with me how proud and happy she was with how strong the NFED is. She felt good about the Foundation’s future and our team who works to make that happen.

We are committed to honoring Mary Kaye’s memory by making sure the NFED thrives for the

next four decades and continues to serve families. We seek to identify treatments for more ectodermal dysplasias, improve diagnoses, pass ELSA and grow our family. There is much work to be done!

Our small-but-mighty organization has had great success by staying true to that founding mission to empower and connect people touched by ectodermal dysplasias through education, support and research. Thank you for believing in this mission and supporting all families affected by ectodermal dysplasias.

Gratefully,

Mary Fete, MSN, RN, CCM Executive Director

Our Mission

To empower and connect people touched by ectodermal dysplasias through education, support, and research.

Our Vision

The National Foundation for Ectodermal Dysplasias will be a recognized leader among health-related nonprofit organizations and will be known for providing comprehensive services with loving care to individuals affected by ectodermal dysplasias and their families; for helping individuals and families benefit from early diagnosis and care, and for spearheading research that ultimately develops a cure.

In Loving Memory of the Incomparable Mary K. Richter

Founder and Executive Director - 1981-2010

National Foundation for Ectodermal Dysplasias

We dedicate this 40th Anniversary Celebration Booklet to Mary Kaye. Her indomitable spirit and vision to make the world a better place for those with ectodermal dysplasias will continue on as we advance the NFED mission.

We Thank Our Sponsors

Champion

The Louis and Gladyce Foster Family Foundation

Founders

Richard and Tina Moss

Straumann Corporation

The Vora Family

Leaders

Anonymous

EspeRare

Pierre Fabre

Partners

Mary K. Richter

Jerry and Lisa Wallis

Advocates

The John Dickie IV Family

The Gasloli Family

Patrons

Todd and Susan Bennett

Kevin Crane, CDT

Mary and Tim Fete

Robert Johnson and Marianne Vermeer

Friends

Anthony and Melonee Fleming

Brianne Frazier

David Hannigan

Kiwanis Club of Belleville, Illinois

Pinnacle Healthcare Consulting

Paul Prachyl

Frede & Rena Taylor - “We Love Nikko Vecchini”

The NFED Celebrates 40 Years!

The NFED turned 40 on December 24, 2021. At our Family Conference in July, we celebrated this incredible milestone with a Gala. It was a magical night filled with awards, Ally Kelso singing “We Can’t Smile Without You”, dancing, fundraising and lots of laughs! We are proud of what we have accomplished and look forward to the next 40 years. Look back at 40 years of pictures and accomplishments by clicking here

We celebrated when the U.S. House of Representatives passed the Ensuring Lasting Smiles Act (S.754/H.R.1916) on April 5, 2022! Our passionate advocates worked feverishly to get it to pass in the U.S. Senate. Unfortunately, that didn’t happen before the end of the 117th Congress but efforts resume with the 118th Congress.

The NFED is leading the ELSA Network which is comprised of more than 70 organizations. We hosted three Virtual Advocacy Days on Capitol Hill to ask Congress to support ELSA. Our families bravely shared their stories.

When passed, this federal bill will provide health care benefits for the medical and dental treatment of not just ectodermal dysplasias, but all congenital anomalies. Click here to learn more about ELSA.

It was pure joy in July when the NFED gathered for our Family Conference for the first time since 2019! Connecting families is what we do best. Together, we are better.

The NFED Staff

is proud to serve you!

Mary Fete

Executive Director

Becky Abbott

Director, Research and Treatment Advocacy

Kelley Atchison

Director, Family and Community Programs

Jodi Edgar Reinhardt

Communications Specialist

Kayla Hollenkamp

Administrative Assistant

Veronica Minard

Director, Marketing and Communications

Lea Richardson

Manager, Community Engagement

Continuing to Climb

Straumann and NFED have been giving back smiles together for over 10 years.

straumann.us

We thank our FOUNDER SPONSOR

Richard and Tina Moss

We thank LEADER SPONSOR We thank LEADER SPONSOR

We thank

ADVOCATE SPONSOR

The Gasloli Family

We thank ADVOCATE SPONSOR

The John Dickie IV Family

Friends of Nikko Vecchini

Nikko Vecchini’s Grandpa’s Pal

In Loving Honor of Nikko Vecchini

Friends of Nikko Vecchini

Friends of Nikko Vecchini

We thank

PATRON SPONSOR

We thank

PATRON SPONSOR

Tim and Mary Fete

Electro

Industrial

Friends of Nikko Vecchini

Friends of Nikko Vecchini

Friends of Nikko Vecchini

Friends of Nikko Vecchini

Friends of Nikko Vecchini

Mechanical Services, Inc.

Batteries & Chargers Rossville, GA

Harley Davidson Racing, Huntington, NY

We thank PATRON SPONSOR

Todd and Susan Bennett

Friends of Nikko Vecchini

to all of our NFED friends

Thank you who supported our 40th Anniversary.

Champions - ($40,000+)

Incontinentia Pigmenti International Foundation (Susanne Emmerich)

Louis J. and June E. Kay Foundation

Oracle America, Inc.

Brian & Evelyn Randall

The Louis & Gladyce Foster Family Foundation

The Vora Family

Founders- ($20,000+)

John P. Middleton Richard & Tina Moss

Straumann Corporation

Gary & Jeanne Wang

Leaders - ($10,000+)

Delta Theta Tau Sorority Inc.

EspeRare

Keith & Ruth Geismar

Robert Greenawalt

Kate W Cassidy Foundation

Pierre Fabre

Joseph & Lynne Posluszny

Robert & Deborah Reed

Smile Train

Richard & Samantha Stratz

Straumann USA, LLC

Partner - ($5,000+)

Bemis Company Foundation/Amcor Foundation

Blanche March Foundation

The John Dickie IV Family

Brad Reinhardt & Jodi Edgar Reinhardt

Tim Fete, MD, MPH & Mary Fete, MSN, RN, CCM

Peter Scott & Christine Gottschalk

Vernon & Valerie Hamilton

Linda Hoffman

Jack & Paula Kriz

Claude & Ingrid Merrill

Parallel Path

Mary Kaye Richter

Rocky Mountain Health Plans

Henry & Margaret Scott Landon & Trisha Stoller

Jerold & Elizabeth Wallis

Advocate - ($2,500+)

Derek Conklin, DDS & Carrie Conklin

The Driscoll Foundation

James & Patricia Duft James Ferriero

Rick & Robin Gasloli

Mark & Kristin Kelso

Lee & Pam Kennedy

Don Kikta, Jr. MyFace

Ozark Prosthodontics

Sally Pruett

Keith & Christine Throm

Joe & Lynn Van Cavage

Robert Johnson & Marianne Vermeer

William & Patti Walton

Patron - ($1,000+)

Tom & Becky Abbott Peter Alexander

Edward & Linda Almeida

Nick & Elizabeth Aniotzbehere

George & Leah Barbar

Robert & Linda Barrett

Todd & Susan Bennett

Muriel Brockmeier

Clayton Butcher, MD

Carlos Castro DDS FACP

Thomas Long & Darcy Comstock

Kevin Crane CDT

Dell Inc.

Teresa Dennis

E.N.E. Consulting Services, Inc.

Robert & Robin Elson

FABENCO

Founding Father’s Foundation

Chris Fields

Anthony & Melonee Fleming

Chris & Janet Ford

The Gaffney Foundation

Michael & Susanne Garza

Brian Goldberg

Albert & Mary Guckes

Jerry & Babs Hajdusiewicz

Dan Hamilton

David Hannigan

Julia Hayes

Gonzalo Hernandez D.D.S. & Laura Hernandez

Allan Hins

Carl & Edwina Hiscock

Thomas & Janet Hough

IBEW Local 280

Iris and Saul Katz Family Foundation, Inc.

Suzanne Kaufman

Kaulig Capital LLC

Keene Smiles

Kevyn Kerr

Kiwanis Club of Belleville

Mark & Susan Lancaster

Shira Lipton

Thomas & Darcy Long

Mark McGregor

Elliott & Nancy Merberg

Clay & Valerie Montgomery

Samantha Mueller

Peter & Heather Murphy

Ryan Murphy & Jessica Russell-Murphy

Kenneth & Angie Nettleton

Zach Oates

Nicole Parish

Roy Pechtel

David & Kathy Reidenouer

Jonathan Richter D.D.S.

Jessica Roe

Patricia Rothman

David & Amanda Rothwell

Daniel & Carolyn Schaub

Corey & Brandie Sessions

Yvette Shukat

David & Pam Sockness

Soft Bones Inc.,

The US Hypophosphatasia Foundation

Mark & Jamie Sommerville

Michael & Rose Stallmeyer

Kris & Jen Steele

Virginia Sybert M.D.

Sean & Lindsay Vora

Wise Inc

Friend - ($500+)

American Academy of Ophthalmology

American Association for Pediatric Ophthalmology & Strabismu American Cleft Palate-Craniofacial Association

Joe & Natalie Angel

Gerald Baker & Kathleen Lanker

Kelle Baker

Jay & Sandra Baraff

Matthew & Krista Basile

John & Jennifer Berge

Shelley & Felice Bergman

George & Susan Bergmann

Gael Bilder

Laura Bravos

Brandi Burton

Mitchell Butzner

Gordon & Ruth Bylsma

Craig & Julie Claeys

Paul Conlon

Cornelia Cook

Crossings Dental Care PA

Mike & Kathy Daniels

Delta Theta Tau Sorority, Inc - XI PHI Chapter

Delta Theta Tau Sorority, Inc. - Omicron Pi Chapter

Delta Theta Tau Sorority, Inc. - Zeta Lambda Chapter

Delta Theta Tau Sorority, Inc. - Beta Chapter

Delta Theta Tau Sorority, Inc. - Past National Officers

Delta Theta Tau Sorority, Inc. - Alpha Omega Chapter

Delta Theta Tau Sorority, Inc. - Lambda Theta Chapter

Delta Theta Tau Sorority, Inc. - Past National Presidents

Mark Dodson

Katrina Dust

Ira & Susan Edelblum

Andrew Eisner Howard & Didi Engle

Richard & Virginia Fell Sr.

Timothy & Kristen Fete Jr.

Brianne Frazier

Jeff Geismar & Sally Freedman

Fuller Hair, Inc

Gene & Denita Gaillard

Bill Miller & Donna Garrett-Miller

James & Ann Geiger

Chris & Sara Gilbert

Michael & Molly Gonsior

Denise Goodbar

Paul Olivo & Kathy Grange, MD

Christopher & Janet Gruber

Donald Gumieny

Everett & Sarah Hamilton

Janet Heberer

Lauren Herskowitz

Brian & Virginia Higgins

James & Melissa Huntley

Brent & Christine Jewel

Lisa Jonak

Darcy Kaye

Gregory Keene, DMD

Gordon & Jo-Ann Kornfeld

Steven Kudwa & Beth Orchard

Gerald Baker & Kathleen Lanker

Mickey Lapp

Herbert & Ellen Levitt

Robert & Susan Lewis J

odi Lillis

Christine Lloyd Daniel & Jana Luallen

Michael & Frances Marigliano

Stephen Marone

Karen McAndrew DMD, MS Kevin McCormick

Dean McNeel DDS & Lori McNeel

Beau Meyer, DDS, MPH

Tim Mickelson

Veronica Minard

Michael & Annette Morrissey

Nathan & Marci Mortensen

Kathleen Motil, MD, PhD

Pamela Mueller Johnson

Tyler & Erin Nawrocki

Kathy Nehrkorn

Kristina Polson

Paul Prachyl

Paul Reidenouer

Tom & Lea Richardson

Satea Robare

Mark Russo M.D.& Deborah Russo

James & Jody Schuermann

Robert Schwartz & Ellen Brown

Anthony Gilliam & Franki Sebock

Don & Cyndi Shurts

Richard & Merry Stone

Cody Snell

Rod & Alice Spartz

Mark & Andrea Starchman Laura Steyer

Joseph & Marci Valenti

Gary & Nina Vincoff

Weinmann Foundation

William Blair and Company

Gary & Shirley Withers

Allen & Denise Wolfbiss

“I am extremely grateful to the NFED for being the family that they are and that they have been to our entire family... And that’s why we say it’s not just a foundation. It’s a FAMILY!”

National Foundation for Ectodermal Dysplasias

- Virginia Higgins, NFED founding family member, volunteer and advocate