A Smile Worth Waiting For!
Check out the new and
P Box 114, 410 E. Main St.
.O. The NFED has just completed a total redesign of our website, www.nfed.
Mascoutah, IL 62258-0114 USA
Phone - 618-566-2020 org. The look is brighter and the overall design makes it easy to navigate.
Fax - 618-566-4718
Web Site - www.nfed.org We can still take secure donations through the website. Check out the
marketplace to order all your NFED merchandise. All NFED families can
visit the “member only” section to download publications and medical
Mary K. Richter, Executive Director articles about ED that have appeared in previous editions of The EDucator.
Carol Agne, Director of Development Simply type in the username nfed and the password smile to access this
Kelley Atchison, Director of Family Support and Outreach
Jodi Edgar Reinhardt, Director of Public Relations page.
Mary Fete, RN, MSN, CCM, Director of Research
Malinda K. Heuring, Director of Education
Beverly A. Meier, Director of Finance and Records
Jackie Schmitz, Office Administrator
WA N T ED
Pam Wisneski, Office Assistant
If you are an AOL subscriber,
please include your phone
BOARD OF DIRECTORS
Honorable Jerry F. Costello
Richard R. Cain, Jr.
Frank H. Farrington, DDS, MS
David Freestone, MD
James L. Gehrs, DDS
Used Cooling Vests number in any e-mails
Donald V. Huebener, DDS, MS If you have a used cooling that you send to the NFED
vest in good condition that
Catherine M. Klingelhoefer
Richard Moss is no longer needed or is
office. Because of spam
issues, AOL will not allow the
Beth Pond too small, please mail it to
Brian F. Randall
the NFED. We will make
Garrett C. Reuter
Mary Kaye Richter
sure that another family will NFED server to e-mail AOL
John A. Stith, MD
Sarah A. Tevis, DDS
benefit from it. addresses.
Anil S. Vora
Don’t Miss the 2008
John E. Gilster, DDS
SCIENTIFIC ADVISORY BOARD
National Family Conference
Alanna F. Bree, MD, Texas Children’s Hospital
Baylor College of Medicine
Timothy J. Fete, Sr., MD, MPH,
Saint Louis University School of Medicine
Information and Registration
Dorothy K. Grange, MD, Washington University
School of Medicine
Brody J. Hildebrand, DDS, MS, Baylor College of Dentistry
Richard A. Lewis, MD, MS, Baylor College of Medicine
Kathleen Motil, MD, PhD, Baylor College of Medicine
Jill Powell, MD, St. Mary’s Health Center
Elaine Siegfried, MD,
Saint Louis University School of Medicine
Raj Sindwani, MD, Saint Louis University
Forms on pages 31 - 34.
School of Medicine
Clark Stanford, DDS, PhD, University of Iowa
Barry Tanner, PhD, Detroit Receiving Hospital and
University Health Center
Tooth Party Packets
J. Timothy Wright, DDS, MS, University of
North Carolina, Chapel Hill
Ronald J. Jorgenson, DDS, PhD
Is your child getting a new set of dentures? Throw them a “Tooth
Newsletter of the Party”!
National Foundation for Ectodermal Dysplasias
You can order everything you need to plan your own tooth party
The EDucator is published four times a year by the National Foundation
for Ectodermal Dysplasias (NFED). The content of The EDucator is
from the NFED. This packet includes games, activities, coloring
for information purposes only. Questions concerning specific patient
issues should always be directed to appropriate professionals for
sheets, and all the excitement you need to get your child excited
resolution. The Foundation’s logo and newsletter material may not be about their new dentures. To order a Tooth Party Packet, send $3 to
reproduced without permission.
Founded in Mascoutah, Illinois, in 1981, the NFED is a NFED, P.O. Box 114, 410 E. Main, Mascoutah, IL 62258-0114 or call
tax-exempt, not-for-profit organization pursuant to Section 501(c)3 of
the Internal Revenue Code. 618-566-2020.
2 Spring 2008
As I See It...
By Mary Kaye Richter
NFED Founder and Executive Director
As I See It...
It’s been a while since I discussed issues that come to that the clinician
us periodically. As I See It, these are all perspectives involved didn’t
of parenting a child affected by ED. In my mind, know as much as
parenting a child affected by ED is not all that different he thought he did.
from an unaffected child. In deference to some of Fortunately, there
our acutely affected individuals, there may be some was no permanent damage but it’s something to
adjustments to my comments needed to accommodate keep in mind. I have come to appreciate clinicians
significant challenges. However, these comments do who recognize the complexity of the ED syndromes
apply to the vast number of families we serve. Of and admit to having experience with them as well
course, you may not agree with some or all of these as having much to learn. I consider some of these
tenets but if I have made you think about them that is individuals to be among the world’s best when it
good enough. comes to ED. However, the range of symptoms
within a single syndrome can be baffling much
1. Let the child find out for himself what he (or she) less when that is multiplied by the number of
can and cannot do. I remember the day Charley recognized ED syndromes. Real experts are few
reminded me about this one as he had heard and far between.
me reiterate it to others at numerous Family
Conferences. The problem he had with me was 3. Don’t be afraid to educate. Families often
that I was not inclined to sign him up for summer complain about the lack of knowledge of their care
baseball because I felt the activity would be too hot providers. One shouldn’t be surprised at that as
for him. Reluctantly, I gave in because I knew he care providers can hardly be expected to know
would be proved wrong. He successfully played about every illness or systemic disease. Most
baseball and it was eventually me that had to clinicians will be grateful to parents who provide
swallow some pride and not him. While it’s true information about the conditions. Consider giving
he ultimately gave up the sport in favor of soccer, them some of our booklets or direct them to our
he gained confidence in learning for himself his website, www.nfed.org. It has just been totally
limits. Yes, you must keep an eye on little ones, redesigned and is a great improvement over the
but they, too, can learn even at a very young age. I former version. You are your child’s best advocate,
have heard of parents refusing to let their children and it is a role you should take seriously.
play outside and making extreme demands of care
givers or educators. The question you must ask 4. Make reasonable requests of schools and others.
yourself is whether or not you want your child to We have no evidence of harm being done to
learn his limits as the only way that can be done children participating in physical education or
is by participating in life. Just as you must try in recess in school, eating in a cafeteria that does not
order to learn to make a pie you must learn for have air-conditioning or playing with friends on
yourself what you can tolerate. So what if they a playground. The only evidence of poor results
go outside and decide to go back indoors a few has always been associated with a secondary
minutes later. I still have images of our son and his illness and in those situations, the child was too
use of popsicles to keep him cool. He sometimes ill to be at school or in day care. Having some
looked pretty funny with purple, green or orange experience with Boards of Education and school
hair. At least the effort was made and something administrators, I know that it is often hard to
was learned as a result. take seriously requests that are not supported by
evidence. I recall one situation when a school
2. No one “knows all about ED”. If a clinician tells administrator called me for support information
you that he or she knows all about ED, turn and and indicated that it was hard to understand
run the other way. I once made that error when special requests for air-conditioning when the
Charley was about six years old and he needed to child was picked up from school in a convertible
be hospitalized. It didn’t take me long to realize exposing the child to the sun and heat. You will
Spring 2008 3
As I See It...
not get off to a good start with your child’s school if your requests are “over the top”. I did request that our
son’s classroom be air-conditioned, and it was. I did request that he be given access to water and bath room
privileges, and that request was also granted. We discussed with staff how to respond if concerns about over-
heating arose or how to take care of bloody noses and answered any questions as they arose. We knew our
son would not benefit from either constant attention to his challenges or constant interventions on our part. If
your child will enter school this fall, contact the NFED for our school packet. It’s full of useful information.
5. Strive for normalcy. Not all children will adapt to wearing a full set of dentures, but making a concerted
effort is well worth the effort. In general, we suggest that children start school with dentures or some sort of
restoration of the dentition. Just like a child must try various activities to determine what they can tolerate,
the only way to learn to wear dentures is by wearing them. Remember, there is almost always more than
one treatment option. Equally important, when considering treatments such as dental implants, finding an
experienced care provider could be key to the success of the treatment. Implant failures are often the result of
inexperience, and individuals familiar with placing implants continue to indicate that providing care for the
ED patient can be quite different than from the average individual. Adapting the dentition to a more normal
configuration can be critically important to the overall success of the patient. One last thought is that during
the treatment phase, it may be better for parents to stay out of the dentist’s operatory. Children have been
known to play on their parents’ emotions, and having you out of the room can eliminate that tendency. If
you want to know specifically what is going to take place, ask your dentist to discuss that with you and your
child, indicate your pleasure with the plan, and then put the child into the hands of your capable dentist. It’s
a bit like taking a child to the nursery while you are in church. They may fuss for a bit, but then they’re fine.
6. Don’t be afraid to talk about it. Open communication can be key to any relationship, and that is certainly the
case with our children. Children have questions that should be answered. When we fail to do so we instill
fear in their minds and validate our reluctance to communicate; both of which are the last things we want
to do. If you cannot talk openly about ED, how will you broach other challenging issues like drug use or
intimacy? Recently, I had the opportunity to listen to a discussion between a young woman affected by ED
and our son. It was the first time she had the opportunity to ask questions of someone who would respond.
The questions came at a rapid fire pace, and while I was glad she finally got the answers she wanted, I felt
badly that she had to wait so long to get them. When your child has a question, simply answer it as best you
can or promise to get the answer for them and do the necessary follow-up. You will develop a relationship
based on trust that will always serve you well.
7. Get over it. The number of people who would like their life to be different than it is has always been of
interest to me. What a shame it would be for someone who is tone deaf to live their life wishing she was
Miley Cyrus or an individual who is blind wanting to play golf like Tiger Woods. Anyone who spends time
wishing for something other than what they are is likely to be disappointed. We can only be at our very best
when we deal with “what is”. Each of us has strengths and weaknesses. Helen Keller certainly found hers in
spite of being deaf and blind, and it is good that no one dissuaded Stephen Hawking from studying physics.
Only we can unlock the potential that is within us. Rather than wishing for what could have been, work with
what is, and you will be amazed by the results. I continue to be impressed by the young people who submit
applications to our college scholarship competition. They have not offered excuses for things they cannot do,
but rather have maximized what they can and have become extraordinarily successful as a result.
8. Remember who is in charge. I first really began to realize who was in charge when Charley got his first set
of teeth. Obviously, I was a slow learner. Who would want a 2½-year-old to be in charge of something so
important? Obviously, his dentist was in charge in terms of making the denture, but it was Charley’s parents
who were in charge when it came to seeing that he wore them. Understanding the importance of being in
charge enables a parent to do what is in the best interest of the child. This doesn’t give a parent the go ahead
to be a dictator or mercenary, but rather the person the child can look to for guidance. Children often flourish
when they are familiar with the boundaries that have been set for them, that there are consequences for
actions and that the parent can be depended upon to assure their success. So whether it is cleaning out the
nose of a toddler, making certain that homework is done or seeing that children fulfill their obligations, the
parent is in charge. Not only will your child learn to appreciate that, they will mimic our conduct when they,
too, become parents.
4 Spring 2008
Hubbard and Noer Families Raise More than
In St. Mary’s Point, Minnesota,
the Hubbard and Noer families
came up with a new type of
Super Bowl celebration – their
3rd Annual Family Skate Event.
On the afternoon of February
3rd, family and friends joined
together to participate in a day of
food, fellowship and fun to raise
funds for the Foundation. NFED
Executive Director Mary Kaye
Richter attended the event and
thoroughly enjoyed meeting all of
the NFED families who joined the
ice skating party. The Hubbard
and Noer families asked people to make a suggested donation of $5 per person or $25 per family. This year,
the event raised $22,726 for the NFED due to the generosity of their family and friends. Thank you to all
who attended and helped make this event such a success, and many thanks to both the Hubbard and Noer
families for their extraordinary efforts!
Raffle Raises Record
And the winners are…
1st place – Lisa Guimand from New Hampshire
2nd place – L. V. Santy from Utah
3rd place – Jan Anderson from Missouri
Claudine, Jason and Joshua Hill won $100 for selling the
first place ticket winner.
The Kelso family from Virginia is the highest ticket
seller for the second year running. They sold 5,640 tickets
this year and earned a $300 registration voucher for the
2008 or 2009 National Family Conference.
Congratulations to the winners and to all of you who participated in the Annual Raffle. This year, you raised
almost $40,000 – an NFED record! Whether you chose to participate in the Raffle for the opportunity to win or
because you wanted to raise awareness for ectodermal dysplasias and the NFED, we sincerely appreciate your
outstanding efforts. This year, we had a large number of first time sellers who had a lot of success by following
the models of our long time sellers. Thanks to everyone for sharing your stories and for making 2008 our most
successful year yet!
Spring 2008 5
Honoraria / Memorial
Remember to Remember
When you make a gift to honor someone and support the NFED, besides honoring them, you become part of a
network of people who are committed to helping individuals affected by ED live a normal life. When you make
a gift in honor of someone, the NFED sends a card to that person indicating that you have made a donation in his
or her name. The amount of the gift is not disclosed.
Your memorial gift to remember someone helps us fund multiple programs and services such as pioneering
research that leads to lifesaving discoveries. You empower us to share knowledge and resources with people
wherever they are in the world – including your community. You provide vital services that help families
affected by ectodermal dysplasia. What better way to remember a loved one that was an important part of our
ED family? When you make a gift in memory of a loved one or friend, the NFED sends a card to the family of the
person being remembered. You simply must provide their name and address information.
The following honoraria and memorial gifts were made to the NFED in the winter of 2008.
Olivia Abrahamian Louie Cefalu Zachary Franck Kayla Hafliger
Sandra Abrahamian Sal and Harriet Cefalu Rosemary Franck Louise DeVaux
Ashley Adams Joshua Chamberlin Megan Gaffney David Noble
Sharon Adams Jackie Crigger Kathleen Gaffney Sheila Roberts
Dylan Allen Angela and Madalyn Keifer Garrett
Mary Conlon Church Richard Garrett Elijah Haupt
Kevin Jacobs Richard Stump Eric Haupt, USN Ret.
The Michael Allen Family
Jane Allen Carver Claeys David Geismar’s The Heberer, Richter,
Julie and Craig Claeys Birthday Weilbacher and Wittlich
Michael R. Allen Leslie Cohen Families
Michael Allen Douglas Coiner Wendi Diamond Dennis Graul and Julie
Glenn Wenger Andrew Dietz Heberer
Kyle Anderson Ira Edelblum James and Mary Heberer
Jeffrey Anderson Naomi Beth Cosner Charles Ernst Janet and Robert
Linda Marcus Jaimee Loewy Heberer, Sr.
Max Anderson Jennifer Mallah Robert Heberer II
Gerald Anderson Zemery Dennis Jeffrey Moskowitz
Ruth Brosius Robert Eicher Deirdre and Alan Noah and Laine Huelsmann
Carl D’Angio Edgar Fleming Olsen Steven Huelsmann
Ruth Hilleary Tammy Geris Joel Robinson
Judith Rubinstein Marc Sher Tyler Huxman
Robert Silver Justin Dzierzawski Mara Silverstein Philip Aylward
Frederick Knapp Jaimee Stulberg
Joel Ash Michael O’Paterny Alex Johnson
Laura Ash Ryan Geismar Gillian Apps
Stephen Emery’s Mark and Deborah Jim Berson
Austin Birthday zycnzj.com/http://www.zycnzj.com/
Russo BP Foundation, Inc.
Kevin Davis Lillian Brown Carol Frederick
The Geismar Family John Frederick
Chris Barbey Kara Everly Leonard Kristal, MD Kraft Foods Matching
Erika Kautz Carol Hinkle Gifts Program
Jack Gilster Terrence Muldoon
Spencer Bolton Wynn Everly Dan Myers Jr. Kevin Schofield
Margie Bolton Kara Everly
Ryan Gruber Aiden Kaufman
Matthew Bonsant Dr. Debra Ferman Paul Friedman Suzanne Kaufman
Debra Labbe Kathy Sokol
6 Spring 2008
Honoraria / Memorial
Allyson Kelso Rebekah House Micheal Perossier Ed Swierczewski
Mark and Kristin Kelso Jamie Murphy- Richard Rainey C. Joseph Bilder
Terri Matus Anderson
Gail Ravnitzky- Caleb Petersen Michelle Testa
Silberglied Jacob Moss and his Cathy Ketchum John Testa
Dee Klingelhoefer’s 19th Bee Epstein-Shepherd Nolan and Phillip Pond Dr. Sarah Tevis
Birthday Suzanne Sorenson Linda Niessen
Mildred Kimmle Robert C. Motter
Robert Motter Rebecca Ponzio Jacob Treebeard Brown
Jim and Delores Sara Ponzio Janet Cutler
Klingelhoefer Kevin Mulryan Joanne Ehret
Mark Schanuel Patricia Manetti Caleb Radley Susan Hughes
Norm Treonis Jerald Glawe Rorik Melberg
Quinn and Cady Sheralynn Severson
Koffman’s 4th Birthday Alex and Justin Murshak Tyler Raisbeck
Christa Balanoff Mikhail Murshak Ann Gurtner Trish and Mike’s
Karen Gerson Engagement
Cristina Gillom Christian Mutchler Mary Kaye Richter Jeff Stern
Mary Gladstone Rita Nafziger Ilona Frieden
Heather Goodman Donna Hinton Lauren Vanhorenbeeck
Krista Gordon Barbara and Sidney Linda Glover
Brad Koffman Nadel Mary Kaye Richter’s work Pamela Traeger
Sally Hausman for the NFED
Jack Kriz Richard and Margaret Richard Vickers
Joseph Kriz Dillon Neubauer Henkel Sal and Harriet Cefalu
Alex La Valley Mark Neubauer Mary Kaye and Charley Nollan Wang
Martha Lewis Richter Annette Abadi
The NFED Staff Penelope Neale Gail Bigelow
Mason Langefeld Joe and Lynn Van Maria Chan
Claire Dase Cavage Mr. and Mrs. Jeff Sands’s Grant Frost
John Langefeld 40th Anniversary Annie Gagan
Martin Krier Rachel Nicksich Stanley Zwirn David Karp
John Nicksich Jennifer Kennedy
Lauren’s 7th Birthday Christian Schmidt Alessandro Lobbia
Angela Amparado Jade Olsen Steve Landis Barry Nisly
Maryann Grieco Edward Pellegrini
Landon Livingston Reva Schneps’s 87th Petra Silton
Theadore Schmidlapp Nicholas K. Orgill Birthday Sue Tsao
Barry Orgill Stanley Zwirn Serena Verfurth
Carol Locke Betty Wang
Larry Spilbeler Diane Orso Metivot Shalom on his Jeanne Wang
Alex Holt installment as Rabbi Yuan Wang
Anna Longval Linda Marcus
Lesley Longval Tyler Paisley Maureen Wesimantle
Baby Boot Camp Mariella Sierra Leslie Kirshner
Lord Jesus Blanche March Charles Burrell
Steven Bain Foundation James Brewer Ian Whittington
James Callaghan Edward Cortes Margie Bolton
Angelina Maestranzi Bob Grothan Teresa Lioi
Vince Maestranzi Stephen Johnson Pebble Beach
zycnzj.com/http://www.zycnzj.com/ Jordan Whittington
Brad Keown Company Margie Bolton
Mary and Jerry Martin Gary Lamb Dolores Silva
Kent Martin John Leeder Jack Zwirn’s 2nd Birthday
Donald Paisley II Amelia Springer Stanley and Gloria Zwirn
Martha Matthew Melissa Whiteman Margaret Perkins
Larry and Pam Grandpa Stanley and
Spilbeler Laurie Partlow Nathan Strader Grandma Gloria Zwirn
Tim Scott Sandy Strader Robert Zwirn
Anthony McDonald, Jr.
Siobhan Edwards Kobe Pellenz
Spring 2008 7
Honoraria / Memorial
James F. Brookshire Laura Innocenzi Jules Braver Rita Romano
Jane Brookshire Lucille Migliaccio Herbert Cramer Lillian Brown
Robert Wynne, Jr. Richard Detofsky Larry Kershaw
Jeanne Chiantese Edward Forst Corinne Miller
Thomas Kelly Anna Langenberg Graham Harrison Beth Pond
Lucille Migliaccio Mary Kaye and Norman Jerome Hoffman Michael Pucko
Richter Raymond Howard David Rameau
Dr. Harold Cline Jefferson Health System Rosario Romano
Linda Marcus John Mainzer Johnson Matthey Inc. George Wilson
Lucille Migliaccio Samuel Karlin
Robert T. Deacon Michael Krug Antonette Sesini
Lambda Alpha Elli Mansola Kathleen Leister Thomas Kelly
Chapter, Avra Liakos Adam Levin Lucille Migliaccio
Delta Theta Tau Joanne Leonard
Sorority, Inc. Don H. Miller Sue Linet Bruce Swierczewski
Jim Williams Debra Lipenta Fran Ann Swierczewski
Albert Denys, Sr. Andrea Miller
Alfred Cossavella Carl Newton Milliman Leota Stump
Terri Matus Rhoda Neubauer Richard Garrett
Ed and Velva Dougherty Alice Overlander
Marcy Wearmouth Glen Perkins David Pantalone Marie Venanzi
George Bickers Scott Pollack Thomas Kelly
Bob Eisenberg Michael Childress Arlene Porter Lucille Migliaccio
Ruth Boorstein George Crisp Mary Kaye and Norman
William and Jeanne Ralph Davis Richter John Wearmouth
Eisenberg Inlet Properties, Inc. Martin Rosenwald Marcy Wearmouth
Dorothy Myers Irma Sarota
Vicki W. Farrington Margaret Perkins Edward Singer Henry J. Wittlich’s
Frank Farrington, Ford Perrine Janet Small Birthday
DDS,MS Andrea Peterson Myrna Soll June Wittlich
Gene Thieman Scott Stahmer
Robert Feldman Valerie Suschin Kenneth C. Wylie
Beth Friend Benjamin Pinkus David Zeft Ronnie and Carol Agne
Alice and Bruce Geismar Steven Zeft
Barbara Doty Arnold Porter Joseph Rodriguez
Baldyga, Dwyer & Alfred Cossavella
Dorothy Ann Freihaut Company
Thomas Kelly Michael Blivess
Lucille Migliaccio Glenn Bowen
Harry Robert Fulmer
Alice and Bruce Geismar
The NFED staff
is saddened to learn
Sylvia R. Gray
the passing of
Sarah Antim from
Arnold Porter from in your estate
8 Spring 2008
Happy Birthday, Chuck!
Little Charley Turns 30 on April 28th
Those of you who have grown up with the Foundation know that “Little
Charley” is Charles Richter, son of founder and executive director, Mary
Kaye, and he’s not so little any more! He’s the inspiration for “Charley’s
Story”, which is Mary Kaye’s diary of mothering a child affected by ED.
He was just three years old when the NFED started back in 1981.
Today, Charley manages the technological aspects of the family farm
operation, Richter Family Farms. When he’s not farming, he’s a driver
for a local concrete company. Both jobs can prove challenging during the
hot summer months, but you’ll never hear him complain.
The NFED continues to hold a special place in his heart, and he’s
always happy to help when asked, and ask we do! He chaperones
field trips with the teenagers attending a Family Conference, makes
innumerable airport runs, talks with other affected individuals when
needed, does handyman chores at the office and is always willing to talk
to the media. For several years, it’s Charley’s wit and lovable personality
that have landed him the role as Master of Ceremonies for the NFED’s
Halloween Bash and the 25th Anniversary celebration.
Charley’s social nature has not subsided as he has aged. He has
never met a
has friends all
Charley, Charles, Chuck or Boo (his family’s loving
nickname for him), we congratulate this one-of-a kind
on his special birthday.
Spring 2008 9
Sharing the Knowledge
2008 Ectodermal Dysplasia Awareness Month
NFED families and friends across the United States and the world got in the spirit and helped spread the word
about ED in their communities. Thank you! Read about what several families did to celebrate Ectodermal
Dysplasia Awareness Month in February.
• NFED volunteer Genie White read Lionel Learns What Matters Most to her Pre-K classes.
• Crystal Mata of Massachusetts set up the NFED as a cause on Facebook to help educate her friends.
• The Haupt and VanHorenbeeck families of Ventura, California were featured in their local newspaper, The
• Jane Nichols distributed information on ED to the senior
Dental Hygiene class at Des Moines Area Community
• Crissy Kephart of Virginia distributed an informational
email to all of her contacts.
• Dee Dee Olsen and Ruth Geismar of New York spoke
about ED and their stories to a group called PACE.
• Ryan Geismar and his family was featured in a 7-page
spread in Woodbury Magazine, a magazine on Long
Island, New York.
• Pam Allen of Arkansas wrote articles about ED for
a disability group and posted ED information in her
community. To celebrate ED Pride Day, she wore a crown
at several public places and sold raffle tickets. Numerous
people stopped to ask her about the crown, which gave her Max Anderson
the opportunity to explain ED and sell them a raffle ticket.
• Nine-year-old Max Anderson, with help from his parents,
Marsha and David, created his own web site and film for ED Awareness Month. To date, he has raised more
than $600 with his film. You can check it out at http://
maxvideo.homestead.com/homepage.html. Way to go,
I put up donation buckets at my work
and at one of the local beauty shops in my
home town. I had the flyer attached to the
buckets and I also sent out an email with that
attached to my friends and family. The local
newspaper also ran an article. Everyone was
very supportive and interested in knowing
more. I would get approached at the grocery
store by people who had read the article and
they were very interested in hearing more
about. Most had never
zycnzj.com/http://www.zycnzj.com/ heard of it at all.
I do think that next year I will get started
earlier and get more donation buckets out in
the community and try to have a piece run on
the local TV network.
10 Spring 2008
Tiffany Ramos of Woodhaven, New York, sent this letter to her contacts:
Dear Friends & Family,
The Ramos family is very happy to participate
in Ectodermal Dysplasia Awareness month this
February. What I would first like to do is give you
a little history about what ED is. Then I will share
my personal story about having a child that is
affected with ED.
The Ectodermal Dysplasias are heritable
disorders affecting the hair, teeth, nail and glands.
There are about 150 different kinds of ED with
symptoms ranging from mild to severe. While
we are not sure how many people have ED, it is
estimated at 1 in 10,000. ED is considered rare
which is why Awareness Month is so important in
generating awareness in the general public so we
can increase diagnoses and treatment for affected
Most people have never heard of anyone
not developing teeth. However that is the reality
for many children and adults affected by a rare
disorder called Ectodermal Dysplasia. Such
individuals typically begin wearing dentures as
young as age 3. As you think about stories you might run for Children’s Dental Health Month
in February, consider a feature on children affected by ED who have few if any teeth and the
challenges they face.
The National Foundation for Ectodermal Dysplasias or NFED is the only charity in the
United States which provides services to affected individuals, their families and care providers.
To learn more about the ED syndromes and the NFED, please visit their web site at www.nfed.
org. You can help me spread the word about ED by forwarding this email to your contacts.
You can also make a real difference in the lives of children and adults affected by Ectodermal
Dysplasia syndromes by supporting the National Foundation for Ectodermal Dysplasias.
When you donate to the NFED, your gift will immediately go to work to provide support
services and hope to our families affected by ED. You can be assured that the NFED uses
its funds wisely as $0.87 cents of every dollar raised is spent on family services, education,
research and treatment.
As most of you all ready know Andrew has Ectodermal Dysplasia. Andrew’s type of ED
is Hypohidrotic Ectodermal Dysplasia (HED). Andrew was diagnosed April of 2002, at the
age of 15 months. He has blonde sparse hair, 7 teeth (5 of which are k-9 shaped), has eczema,
and other dry skin conditions. As a young mother it is hard naturally, but having a child with
a genetic disorder is even harder. If it was not for the NFED I don’t know where I would have
gone to for help. The NFED were the first people to help me better understand what it was that
Andrew was diagnosed with. If it were not for them, I really don’t know where I would have
found the answers to my questions. They were very supportive to my family and I. Everything
that I have learned about ED has come from the NFED and the affected families. Please help
me in spreading the word about ED and in trying to help raise money.
Spring 2008 11
Dear Friends at the NFED,
What a busy month of fundraising for Zemery and me! We
started out by doing a bake sale/raffle on February 10th at one
of our local grocery stores called Giant Food. We had tables
set up with baked goods, NFED items for sale, raffle tickets,
a donation jar and a DVD player showing the NFED video.
Starbucks donated the coffee and the hot chocolate. It was a
very cold and windy day, and we only lasted 3 ½ hours. We
made $75 in bake sale/donations and $24 in raffle ticket sales.
Did that stop us? Oh no!
We live in a little community called Crossroads. We got
permission from our HOA to pass out a flyer that we had
made. The flyer explained that Zemery lived in the community, he had a form of ED, we were celebrating national
awareness month and we would be having a bake sale/raffle at the clubhouse on February 16th where Starbucks would
provide hot chocolate and coffee. The flyer also mentioned the web site to find out more information about ED. We
passed out 440 flyers door to door. We had the same tables set up, and Starbucks actually sent a person out to us to
serve the hot chocolate and coffee. They also handed out coupons for free drinks. We were out for about six hours. We
made $232 in bake sale/donations and $35 in raffle ticket sales. It also was a cold, windy day. Did that stop us? Oh no!
We then had another bake sale/raffle at Aden Grocery, which is a little country store owned by friends of mine. We
set up the same tables, but without Starbucks. We made $283 in bake sale/donations and $12 in raffle ticket sales. It
also was a cold and windy day with snow flurries. Did that stop us? Oh no!
We then set up the tables at my office, Dr. Alfred C. Griffin and Dr. Joseph Errera Orthodontics. We had a small bake
sale the first two days, and we just left the table up with the NFED video playing, donation jar, raffle, NFED items for
sale and ED information for all to see. No elements to weather. We made $290 in bake sale/donations and $259 in raffle
February was a great month and very fun to do for Zemery and me. It’s funny to think back about each event. It
would always be fairly warm and sunny the day before and turn cold on the day of each event. We ended up canceling
one event at Blooms Grocery due to snow, but they donated a gift card which came in handy to buy baked goods for our
This would not have been possible without the help and donations of a lot of people: Giant Food Grocery, Blooms
Grocery, Aden Grocery, Starbucks, Shops of Haymarket, Crossroad Community, and all my friends, co-workers and
family that helped bake and gave us support.
Thanks to the NFED for all of their support and for giving us the tools to help bring awareness.
Teresa and Zemery Dennis
Here We Come! 18th Annual Apple
Members of the NFED staff frequently attend
professional meetings which take us to different parts
Classic Golf Tournament
of the country. If you would like to meet with one of
Plans for the 18th Annual Apple Classic Golf
us, contact us to see if a meeting can be arranged.
Tournament sponsored by the NFED are well
zycnzj.com/http://www.zycnzj.com/ will be held Friday, June 6, 2008,
underway. The event
Mary Kaye Richter, NFED Executive Director
at Far Oaks Golf Club in Caseyville, Illinois with a
Washington, D.C. - April 13-15, April 20 – 25,
shotgun start at noon. In addition to the golf scramble,
June 22 – 24
the day will include a raffle, a live auction and a silent
Chicago, Illinois – July 9-10, July 30
auction. Anyone wishing to play, become a sponsor
or donate items to the auctions may contact Carol at
Malinda Heuring, NFED Director of Education and
firstname.lastname@example.org or by calling the NFED office. For more
Mary Fete, RN, MSN, Director of Research
information or to download a registration form, visit
Washington, D.C. – April 9 – 11, June 11-12
our web site at www.nfed.org.
Iowa City, Iowa – June 2-3
12 Spring 2008
Start Spreading the Word
NFED Awareness Items To Give and Get Through The Year!
FED Lionel Learns What
ull C olor N envelopesb)y ED.
f 12 Fs $12 (wiitlh ren affected
12 Matters Most
Se t o rd d $15
ote crants are thos
e of c
Men’s T-Shirts Silicone Fitted
$15 Awareness T-Shirts
Child and Adult Sizes Available
Tax, shipping, and handling charges
Please send _____ sets of NFED Note cards (12 cards) @ $12 per set
are included in the price of the item.
Please send _____ Mouse Pads @ $5 each
Please add $5 for any order outside the
Please send _____ Lionel Learns What Matters Most @ $15 each United States.
Please send me _____Silicone Awareness Wristbands @ $2 each _____ Child Size _____ Adult Size
Please send me _____ Women’s Fitted T-Shirts @ $17 each ___ Small ___Medium ___Large ___ X- Large
Please send me _____Men’s T-Shirts @ $15 each ___Medium ___Large ___ X- Large ___ XX- Large
_____ Please send me the free brochure - You Can Do It, Too -- A Guide to Finding Friends and Funds for ED, for helpful
tips on planning ectodermal dysplasias awareness and fundraising activities in my community.
Total Amount Enclosed ______________
_____ Enclosed is a check or money order _____ Please charge to my credit card ____MasterCard ____Visa
Card Number _____________________________________________ Expiration date _____________________________________
Name on Card ________________________________________________________________________________________________
City ___________________________________ State ___________________________________ Zip ____________________
You can order items on-line though the NFED marketplace at http://nfed.org/marketplace_publication.asp.
Spring 2008 13
2008 International Conference on
Ectodermal Dysplasias Classification
More than 70 brilliant minds from 23 countries met in March in Charleston,
South Carolina for the International Conference on Ectodermal Dysplasias
Classification. Their goal was to develop a consensus on a new classification
of ectodermal dysplasias to lead to a better diagnostic approach and
treatment for affected individuals.
The NFED and the Medical University of South Carolina (MUSC)
sponsored the meeting. Mary Fete, NFED’s Director of Research, and Carlos
Salinas, DMD, Professor and Director in the Division of Craniofacial Genetics
of the Department of Pediatric Dentistry and Orthodontics of the College of
Dental Medicine at MUSC, organized and hosted it.
Mary K. Richter, NFED’s executive director said: “It seems as though we
are always talking about one meeting or another as being a highlight in the
Foundation’s history. However, the Classification Conference could well be
in a league of its own. For the very first time, an assemblage of extraordinary
researchers and clinicians from around the world came together to discuss
the challenging issues related to classification. While the question, ‘what
is an ectodermal dysplasia syndrome?’ may sound simple enough, getting Dr. Carlos Salinas and
world-wide agreement was a thought provoking exercise. The group was Mary Kaye Richter
highly engaged, energized and eager to participate. In the end, the participants
were solid in their agreement of what needed to be done with an international panel named to move the
”We have been using for over 30 years a clinical classification based on clinical signs and symptoms,”
Dr. Salinas said. “However in the last 10 years we have witnessed a real explosion of knowledge with the
advances of the human genome and molecular genetics. We thought that it was the right time to discuss
how to integrate the clinical knowledge with the new advances in molecular genetics. The Conference
dialogues and vivid discussions confirmed the importance of the topic and believe me it was a luxury to
have in one meeting such a wonderful group of top experts in the matter.”
Experts have typically classified ED syndromes in different ways to suit their interests. Clinicians
have used a phenotypic classification, concentrating on cardinal signs and symptoms, usually based
on the tenet that EDs are genetic disorders affecting two or more ectodermal
defects. The problems with this approach involved the scope of cardinal
features, overlapping non-ectodermal features, and the issue of isolated
dysplasias of ectodermal derivatives.
On a biological level, some experts are interested in genomic
classifications (grouping the ED syndromes on the basis of the responsible
gene mutations). Others are interested in grouping the ED syndromes on
the basis of the structural protein or enzymatic pathway that is affected
by the mutations. There are also individuals who are interested in
classification for administrative or financial reasons in order to allocate
funds for treatment or research, to maximize funding from state or
government sources, or to maximize insurance benefits.
The conference speakers addressed all of these topics. They provided
thought provoking scientific presentations and engaged in focused
discussions. Participants outlined a strategic plan as the next steps and
charged a committee to activate the plan over the course of the next year.
Dr. Carlos Salinas and Mary Fete
14 Spring 2008
John Opitz, MD was recognized at the
conference for his contributions to the field
of human and medical genetics in particular
for his supportive role in the study of ED.
He is the Professor of Pediatrics, Pathology,
Human Genetics, and Obstetrics and
Gynecology at the University of Utah Health
Sciences Center in Salt Lake City. Presently,
his research focuses primarily on multiple
congenital syndromes associated with mental
retardation. He has provided a unifying
concept linking human evolution, genetics,
and development, and he has described
a large number of human developmental
abnormalities, several of which are named for
Speakers, from 23 different countries included
some of the world experts on classifiication and
the Ectodermal Dysplasia Syndromes.
The following individuals were named to the Classification Committee:
Carlos F. Salinas, DMD, FACD Alan Irvine, MD, FRCPI, MRCP Kari Storhaug, Director, PhD
Medical University of South Carolina, USA Our Lady’s Hospital for Sick Children, TAKO-centre, Norway
Mary Fete, RN, MSN Virginia P. Sybert, MD
NFED, USA Peter H. Itin, Professor Dr Med University of Washington and Group Health
University Basel, Switzerland
Eleidi A. Chautard-Freire-Maia, DSc
Federal University of Paraná, Brazil Ronald J. Jorgenson, DDS, PhD J. Timothy Wright, DDS, MS
Retired, Applied Genetics, Inc., USA University of North Carolina at Chapel Hill,
Rena N. D’Souza, DDS, PhD USA
Texas A&M Health Science Center, USA John M. Opitz, MD
University of Utah Health Sciences Center, Jonathan Zonana, MD
John J. DiGiovanna, MD USA Oregon Health & Science University, USA
Brown University, USA
Manuela Priolo, MD, PhD
Bryan D. Hall, MD Azienda Ospedaliera Bianchi-Melacrino-
University of Kentucky, USA Morelli, Italy
Spring 2008 15
We Welcome the Following
New Families to the NFED Family
The Ali Family from Saudi Arabia The Finein Family from Virginia The Novak Family from
The Allemana Family from Illinois The Ganard Family from Colarado
The Almedida Family from Birmingham, England The Perkes Family from Utah
Pernambuco, Brazil The Graning Family from Minnesota The Peterkin Family from
The Andreas Family from Ohio The Grant Family from Iowa Brisbane, Australia
The Barker Family from Virginia The Greene Family from North The Rauschenberger Family
The Bergstrom Family from Carolina from North Dakota
California The Grime Family from Ohio The Roberts Family from
The Berry Family from Florida The Guba Family from New York North Carolina
The Blankenship Family from The Hale Family from Colorado The Rouillard-Horne Family
Ohio The Harles Family from Tennesse from Minnesota
The Bonsant Family from Maine The Haynes Family from Michigan The Russell Family from
The Booth Family from Alabama The Hicks Family from Tennessee New York
The Brown Family from Virginia The Hoefler Family from The Sanchez Family from
The Cirota Family from Massachusetts Florida
Massachusetts The Hunter Family from Kansas The Scott Family from New York
The Clarke Family from Nevada The Jampsa Family from Minnesota The Seal Family from Maryland
The Coetzee Family from NW The Johnson Family from The Smith Family from Virginia
South Africa Massachusetts The Stowers Family from
The Conrad Family from Maryland The Johnson Family from Georgia Indiana
The Coomer Family from The Kean Family from Great Britain The Sweeney Family from
California The Key Family from Tennessee Tennessee
The Dagli Family from Califorina The Kruse Family from Illinois The Thompson Family from
The Dillingham Family from The Lautaru Family from Romania Illinois
Colorado The Lee Family from Alabama The Toon Family from
The Driscoll Family from Florida The MacDonald Family from Florida Middlesex, England
The Duncan Family from The Maggard Family from Michigan The Waldkirch Family from
South Carolina The McAdams Family from Wisconsin
The Emrah Family from Indiana North Carolina The Watkinson Family from
The English Family from The McNair Family from Texas
zycnzj.com/http://www.zycnzj.com/ Mutin Keynes, United
Louisiana The Moorer Family from Texas Kingdom
The Eslick Family from Tennessee The Muniz Family from Puerto Rico The White Family from
The Espinoza Family from The Mutchler Family from Georgia California
Colorado The Niemeir Family from Montana
The Ezell Family from North The Nish Family from New York
Carolina The Nix Family from Florida
16 Spring 2008
Where Are We Now?
The NFED currently has a record of more than 5,000 individuals affected by ED syndromes living all
around the world. If you know someone affected by an ED syndrome who is not in contact with our
office, please encourage them to contact us. Below is a listing of the number of individuals who are
affected by ED in each state and each country and who are registered with the NFED.
USA New Jersey - 110 Central Africa - 1 Mexico - 19
Alaska - 11 New Mexico - 18 Chile - 2 Netherlands - 14
Alabama - 47 Nevada - 13 China - 5 New Zealand - 12
Arkansas - 20 New York - 212 Colombia - 3 Northern Ireland - 2
Arizona - 49 Ohio - 162 Cuba - 2 Norway - 14
California - 281 Oklahoma - 36 Cyprus - 4 Oman - 1
Colorado - 69 Oregon - 75 Denmark - 7 Pakistan - 7
Connecticut - 46 Pennsylvania - 136 Djibouti - 1 Palestine - 1
District of Columbia - 2 Rhode Island - 15 Dominican Republic - 1 Peru - 1
Delaware - 6 South Carolina - 59 Ecuador - 1 Philippines - 10
Florida - 150 South Dakota 4 Egypt - 2 Poland 2-
Georgia - 102 Tennessee - 72 England - 129 Romania - 1
Hawaii - 13 Texas - 240 France - 18 Saudi Arabia - 3
Iowa - 69 Utah - 54 Germany - 13 Scotland - 14
Idaho - 33 Virginia - 99 Great Britain - 4 Siberia - 1
Illinois - 98 Vermont - 17 Greece - 7 Singapore - 2
Indiana - 78 Washington - 111 Holland - 6 South Africa - 19
Kansas - 45 Wisconsin - 64 Hong Kong - 1 Spain - 10
Kentucky - 52 West Virginia - 19 Iceland - 1 Sri Lanka - 1
Louisiana - 31 Wyoming - 13 India - 17 Sweden - 6
Massachusetts - 114 Iran - 2 Switzerland - 2
Maryland - 72 Ireland - 17 Taiwan - 1
Maine - 26 Country Israel - 20 Tanzania - 1
Michigan - 169 Argentina - 8 Italy - 17 Thailand - 1
Minnesota - 88 Australia - 87 Japan - 5 Trinidad - 2
Missouri - 87 Austria - 3 Jordan - 2 Turkey - 1
Mississippi - 37 zycnzj.com/http://www.zycnzj.com/
Barbados - - 1 Korea - 1 United Arab Emirates - 3
Montana - 9 Belgium - 3 Korea, Republic of United Kingdom - 26
North Carolina - 103 Botswana - 1 (South) - 1 Uraguay - 1
North Dakota - 4 Brazil - 6 Kuwait - 1 Venezuela - 1
Nebraska - 36 Bulgaria - 2 Lithuania - 1 Wales - 2
New Hampshire - 20 Canada - 177 Malaysia - 4 West Indies - 1
Spring 2008 17
Dental Treatment Center Program Offers ED
Patients Reduced Fees for Dental Care
If you or your child affected by ectodermal dysplasia needs dental care, whether it’s dentures or
dental implants, you may want to consider one of the universities in the NFED’s Dental Treatment
Center Program. The Foundation has partnered with
universities across the United States to provide dental
care at reduced fees for individuals affected by ectodermal
dysplasia syndromes. Our goal is to increase their access to
quality and affordable oral health care.
It is the patient’s responsibility to make an informed
decision as to the appropriateness of care and to make
suitable arrangements for payment of associated fees.
These are the participating dental treatment centers:
• Saint Louis University Center for Advanced Dental
• Southern Illinois University School of Dental
• University of Alabama at Birmingham
• University of Iowa
• University of Missouri-Kansas City
• University of Pennsylvania
Fees vary according to the location. All travel, lodging
and meal expenses associated with treatment are the
patient’s responsibility. We encourage patients to apply to
the NFED’s Treatment Assistance Program for financial
assistance with fees before beginning treatment. Contact the
NFED or visit our web site at www.nfed.org for more information about the Treatment Assistance
Individuals who want to participate in the Dental Treatment Center Program must complete an
application which includes a Patient Profile, a Client Survey, a current photograph at least 2” x 3” in
size, and a letter from a physician confirming the diagnosis. To request a Dental Treatment Center
Program application, you can download it from our web site, www.nfed.org, email us at info@nfed.
org, or call us at 618-566-2020.
The NFED contacts all applicants upon receipt and review of their application. Approved
applicants will be referred to a contact person at the appropriate university. Applicants will be
responsible for contacting the university to arrange an appointment for an intra-oral evaluation. The
NFED will share the name of the approved applicants with the university staff.
Contributing partners, who are helping to make these centers possible include 3i - Implant
Innovations, Inc., Astra Tech, Dental Arts Lab and Straumann USA Corporation.
If you have questions, contact Mary Fete, Director of Research and Treatment Assistance Program
at 618-566-2020 or email@example.com.
18 Spring 2008
Ki d s‘
C o r ner
Camp Discovery 2008
The American Academy of Dermatology is proud to offer four camping
Quotes from sessions this year for young people with skin conditions who are between
the ages of 8 and 16. Under the expert care of dermatologists and nurses,
Campers! Camp Discovery gives campers the opportunity to spend a week with other
young people with similar skin conditions, while participating in activities
such as swimming, boating, fishing, arts and crafts and lots of all camp
"A special place for games and activities. Many of the counselors also have skin conditions and
special people" can provide support and advice to the campers.
There is no fee to attend this very special camp. Full scholarships,
"Camp has been an including transportation, are provided by the Academy through generous
eye opening experience donations from its members, outside organizations and individuals.
that has shown me
• July 6 – 11, Teen Camp in Crosslake, Minnesota (ages 15 – 16)
how wonderful people • July 12 – 18, Junior Camp in Crosslake, Minnesota (ages 10 – 14)
are no matter how bad • August 9 – 16, Camp Horizon, Millville, Pennsylvania (ages 8 –
their skin disorder" 13)
• August 10 – 15, Camp Dermadillo, Burton, Texas (ages 9 – 16)
"I like hanging out with For information about volunteering at one of the camps or referring a child
people who really do to Camp Discovery, visit their web site at campdiscovery.org or contact
Janine Mueller at 847-240-1737 or firstname.lastname@example.org.
know how you feel"
"I like the fact that
nobody teases me"
The Children’s Skin Disease Foundation is now accepting applications for
Camp Wonder 2008, an incredible camping experience being offered to
"The whole experience is children with skin disease, age 7-16, at no cost to the organization, child or
zycnzj.com/http://www.zycnzj.com/ to participate in exciting activities,
family. The week offers the opportunity
unforgettable and totally form lasting friendships and ultimately develop a stronger sense of self-
priceless. I'm definitely esteem while under the careful and loving supervision of an excellent
lucky to be here. I fit in at medical staff and counselors. The session will be from June 22-June 28, 2008
camp more than anywhere in Livermore, California.
else on earth. Camp is For more information, contact Christine Tenconi, 925-351-7225 or e-mail:
my heaven on earth" email@example.com. Applications accepted on a first come basis.
Spring 2008 19
Family Support Network
The Family Support Network continues to flourish in 2008. Liaisons are answering calls and emails from the ED
community on a regular basis, and families are making connections. Thank you for reaching out through this new
Liaisons, who are parents of children affected by ED or are adults affected by ED, are excited to hear from families
in their area. That’s right, AREA. Liaisons are here to serve the families in their state and states surrounding them.
If you have not yet written to your liaison, please take the time to do so. They want to hear from you and meet
you. Liaisons also want to know how they can best serve you. Would you like to see a family gathering in your
area? Are you thinking about hosting some kind of fundraising event? Or, would you simply like to meet more
families? They are here to help you with any of those ideas or are simply there just to talk or listen. They want to
put you in touch with other families near you, provide you with NFED information and share their experiences.
Your liaison will attend the National Family Conference this summer in Iowa and hopes to see you and your
Please contact Kelley Atchison at the NFED office if you have any questions.
Contact the Liaison in Your Area
Julie Claeys Dee Olsen
Michigan New York
DeAnn Huxman Beth Pond
Janet Johnson Russ Wilson
20 Spring 2008
An Message From Liaison DeeDee Olsen
By Dee Dee Olsen
My name is Dee Dee Olsen and I serve as a family liaison for the NFED. I live on Long
Island, New York. My husband and I have three children. Our middle child, Jade age
6, was born with Focal
(also called Goltz
to her birth, we
had never heard of
Goltz syndrome or
While pregnant with
Jade, we assumed all
was well and that she
had no medical issues.
Upon Jade’s birth,
we were shocked and
afraid. We were not
prepared to have a
child born with special
needs. Her skin was so
thin she bled and she
was blind in one eye,
which would require a
After taking a few
weeks to adjust to our new circumstances, we picked up the phone and reached out
to the NFED. We never knew of the extensive community that was out there eager to
help us in any way necessary before that call. The Foundation welcomed our family
with loving and caring arms. We received so much from the NFED, and we are forever
grateful. The NFED gave us so much more than concrete services and information; they
gave us hope and strength.
Over the past six years we can’t believe where we’ve come or where we’ve been.
Jade is a completely normal, happy and healthy six year old (yes, her skin is thin and
she wears a prosthetic eye but as she says “everybody’s special in their own special
way“). Through the NFED, we have met so many wonderful people. We have seen
so many families meet and overcome challenges far greater than ours. We have been
overwhelmed and humbled, all through our contact with the NFED and the families they
The NFED is a family to us - family we never knew we had, but could not imagine
living without! It has become our mission to help other families in small compensation
for all the NFED has done for us. We feel we can never give back all that has been given
to us, but we will never stop trying. As a family liaison, I would love to be of assistance
should you need it. I’d love to try and pay forward just a bit of the kind, helpful, and
knowledgeable assistance given to me by the NFED.
Spring 2008 21
A Smile Worth Waiting For
Written by Doreen Fera
At age 87, Mr. Joe Barone has lots to smile about. As
NFED’s oldest member, and one of the first 30 members
of the organization, Joe has been an inspiration from
day one. His health is excellent, and he continues an
active lifestyle. But it’s his brand new smile that really
says it all!
“Wanna see a beautiful set of teeth?” he says as
he flashes his new and improved pearly whites. After
16 months of treatment, Joe has the teeth he always
dreamed of — ones that look, feel and behave as his
own. He received dental implants under the care of
Dr. Robert Bentz, a board certified prosthodontist in
“Joe is proof positive that it’s never too late to get
the smile you’ve always wanted,” say Dr. Bentz. “His
treatment was a total success.”
For Mr. Barone, who got his first set of partial dentures just before World War II at age 20, making the decision
to get dental implants 66 years later was an easy one.
“I was facing the fact that my four remaining teeth [which held my partial dentures in place] would have to
be removed. I didn’t want to get full dentures and use pastes. I didn’t want problems with speaking and eating
at my age!” he said.
He also wanted to be a role model for other adults with ED who might be considering getting implants in
their 40s, 50s, 60s or later.
“If my story today is told at my age, I could help them have the best solution. I especially want older people
with ED to know that implants can change their lives,” he said.
For Mr. Barone, ectodermal dysplasia did not significantly alter the normal protocol for getting dental
implants. As for most patients undergoing extensive reconstruction, treatment was completed in carefully
orchestrated stages, to allow plenty of time for healing, and to ensure optimal comfort throughout the process.
Since Mr. Barone is in good health, his age was not a factor, notes Dr. Bentz, who has placed implants for patients
as old as 92.
“Implants are one of the most leading and predictable procedures in dentistry right now,” says Dr. Bentz.
But, he notes, many general dentists are not trained in implant dentistry, and may not inform patients about this
“Some patients may mistakenly believe they are not candidates for implants, when that simply is not the
case,” said Dr. Bentz. “In fact, when teeth are missing, dental implants are widely considered the optimal
treatment for restoring chewing function, and improving speech, swallowing and esthetics. Dr. Bentz
recommends that ED patients interested in dental implants should consult with a prosthodontist to determine the
best treatment approach for them.
Because prosthodontists have extensive training in complex restorative dentistry, they treat patients with
major oral health issues, including birth defects, serious trauma or degenerative diseases. As such, they can
employ the best combination of techniques and treatment options for each patient’s needs.
For example, Mr. Barone received a combination approach that worked best for him. Dr. Bentz placed six
dental implants connected to a permanent bridge in his upper arch and created an implant assisted over-denture
for his lower arch. The lower arch includes four dental implants in the front, and a removable denture that snaps
“My top teeth stay in place permanently and I brush them like everyone else. The bottom clicks on and really
stays put,” says Mr. Barone.
Implant retained over-dentures are ten times tighter than normal partial dentures, says Dr. Bentz, because
they are machine surfaced.
“I can eat anything without any problems. I never have to worry about wobbly teeth. I can even eat tomatoes
without worrying about the seeds getting underneath my dentures,” Mr. Barone said.
22 Spring 2008
A Life of Inspiration
Mr. Barone’s involvement in NFED represents more than
meets they eye, says Mary Kaye Richter, NFED founder
and Executive Director. Their friendship began in the
early 1980s, when little was known about ED, and a child
affected by ED was featured, along with his NASA cooling
vest, on the show “That’s Incredible!” After viewing the
program, Joe reached out to the mother of the child. So did
Mary Kaye. Soon after, they were put in touch with one
another. NFED was in its infancy as an organization, and
Mr. Barone was shaping an important part of the journey.
“At that time, as a mother of a son who has ED, [I
was] overwhelmed at the knowledge —the relief that
Joe with Carver Claeys at the
my son could grow to become a senior citizen. There was
2001 National Family Conference
also the knowledge that Joe was such a lovely gentlemen,
that my son can be the same kind of gentleman. That was
important to me at the time, and it’s been important to
every other family that has met Joe since,” she said.
Mr. Barone has spoken at nine NFED annual conferences since becoming a member. He encourages parents to
support active, healthy lifestyles for their children, and stands as a role model of a full and rewarding life.
Joe was a shy boy who grew up in a close-knit family of 10 siblings, two of whom also were affected by ED.
He remembers trying to keep cool during brutally hot Philadelphia summers, long before air conditioning was
“Back then, my brother and I would press our faces against the marble between our kitchen and dining
room,” he said. On hot nights he and his older brother would lay newspaper on the concrete floor of their
family’s basement and sleep on it, to stay cool, he said.
Always adapting to meet his unique needs, Joe never let his condition keep him from being active. Thanks to
ED, he took to water “like a fish,” he says. By high school, he was captain of his school’s swim team, having had
more experience in the water than most other boys. During World War II, he worked in a defense supply factory
that was not air conditioned. Since he was such as hard worker, his boss gave him leave during the unbearable
summer months, so he could lifeguard at the Pocono Mountains. Until age 75, he worked at the busy restaurant
and tavern he and his siblings owned and operated in a Philadelphia suburb.
“I think Joe has always been one that shows us that you go for what you want to do. It’s what he’s shown
the younger kids, and even other adults who are affected by ectodermal dysplasia,”said Richter. Getting dental
implants late in life is just one of his latest examples, she said.
Medical Coverage for Implants
Although many patients pay out-of-pocket for dental implants, more and more ED families are having success
with getting full coverage under their medical insurance, NFED Education Director Malinda Heuring said.
“Implants are getting much more common for people with ED, but the cost factor is often prohibitive.
That’s why we are working hard to help families with medical insurance to get their insurers to pay for [dental
implants],” she said.
Indeed, NFED has an exhaustive amount of data on the insurance industry’s obligation to provide treatment
for the dental aspects of the various ectodermal dysplasias. This includes copies of dental benefits that have
been paid under medical insurance policies. This information is helpful in identifying companies who may have
approved benefits for one policyholder, and then denied them for another.
Because the ectodermal dysplasias are genetically determined birth defects, treatment for inherent dental
abnormalities should be covered by ordinary medical insurance. To assist families with obtaining insurance
benefits for oral health care, NFED has implemented a multi-step strategy and a guide for appealing insurance
decisions. NFED also has been instrumental in helping affect change in New York, which now mandate oral
health benefits for all children with congenital diseases or anomalies.
With NFED’s supportive materials and coaching, families who do submit oral health claims are receiving
favorable responses from insurers in at least 50 percent of the cases, Heuring said. “The process can take as long
as five months to complete, but it is well worth it.”
Mr. Barone, who waited more than 60 years to upgrade his smile, would likely agree.
“I can’t stop smiling,” he says. “Dr. Bentz gave me a beautiful set of teeth. I don’t know why I waited so
Spring 2008 23
Ectodermal Dysplasia Is No Match for
Reprinted with permission from Hometown Health, a publication of Austin Medical Center.
Isaac Wangen has been an avid wrestler since he was in
kindergarten. He and his family have been wrestling with
ectodermal dysplasia since he was born.
The 11-year-old fifth grader at Hayfield Elementary
School in Hayfield, Minnesota, isn’t about to let his condition
take him down.
“Isaac may be the smallest guy in his class, but he’s
probably the toughest,” says Kim Wangen, his mother. “God
gave him a strong and compassionate heart and will to
survive. Whether it is his zest for life or his intelligence – he’s
a straight-A student – Isaac is tough.”
Cheers from the Start
Isaac was born to cheers in the delivery room. With three
daughters (Lacy, now 23; Rose, now 21; and Hannah, now 16)
his parents were hoping for a boy.
Kim’s physician told her the baby had a cleft, an abnormal development of the upper lip and roof of the
mouth. Cleft palate and cleft lip can cause problems with feeding and speech and can be disfiguring.
“I remember there was a hush in the room when I first saw Isaac,” says Kim. “I thought he looked different,
but it didn’t matter. This was my son. The first thing I said was, ‘It doesn’t matter, little man. I love you.’”
“But at night in the privacy of my hospital room, I cried thinking about how others would view and treat
Isaac when he was older,” says Kim. “A nurse who checked on me saw that I was upset and talked to me about
my fears. She found an old pediatric medical book with a picture of a child born with a cleft and a picture of him
after it was repaired. I will never forget the relief I felt. Here was a picture of a child with a wide smile – a little
crooked, but beautiful – repaired within a year of his birth. I felt hope that a ‘fix’ was possible.”
The Perfect Match
Two days later, she and her husband, Arleigh, took Isaac to Mayo Clinic for an appointment with Uldis Bite,
MD, a plastic surgeon who specializes in craniofacial anomalies. Little did they know then how often they would
make the trip to Mayo Clinic in the years ahead.
“I remember the first appointment with Dr. Bite and his team like it was yesterday,” says Kim. “From the
moment we met him, we felt acceptance and hope. He was warm and positive and told us, ‘Don’t worry, we’ll
fix Isaac. We’ll give him the best smile we can for his graduation picture.’ In that way, he let us know this was
a long-range plan, but that Isaac would be fixed to look the best he could. It was the best news we could have
heard. Dr. Bite laid out a plan for Isaac and coordinated a team of doctors and specialists to begin the road to
repair and recovery.”
Thrown off Guard
The couple’s sense of control was about to be thrown off. Kim, a registered nurse at Austin Medical Center –
part of the Mayo Health System – suspected something more might be wrong with her son. He overheated easily
when dressed warmly; and he had sensitive eyes, constant nasal discharge, dry skin, thin wiry hair, and late
tooth development. Kim had started looking through pediatric journals. One day, she ran across a picture and
description of a boy who had ectodermal dysplasia. It fit Isaac exactly.
The diagnosis was confirmed a month later when the couple met with Virginia Michels, MD, a pediatric
geneticist at Mayo Clinic.
“It was hard to hear, but at last we had the full picture of what we would be wrestling with,” says Kim. Since
then, Isaac has had 10 surgeries at Mayo Clinic – the first when he was three weeks old. The procedures – six
24 Spring 2008
involved hospitalization at Mayo Eugenio Litta Children’s Hospital at
Mayo Clinic in Rochester – include:
• A palate expander attached to the roof of his mouth to
prepare for his first repair surgery.
• Surgeries to repair his nose, lip and soft palate; close his hard
palate; and repair his septum, roof of his mouth and nose.
• Urinary tract surgeries and hernia repair
• Examining inside his eyes for corneal abrasions and
• Oral surgery to pull nine teeth
• A bone graft from his hip to his nose and the roof of his
The Wangens are checking into getting a small denture plate
for Isaac’s upper jaw. He has enough primary teeth to allow him
to eat soft foods – pizza, spaghetti and ice cream – but he has few
permanent teeth. When he is older, he will need dental implants so
he can eat and talk normally and look normal.
After one surgery, Isaac needed a blood transfusion and had to
be in arm restraints for two weeks. After the bone graft last year, he
couldn’t run or jump for three weeks – not easy for an active preteen. People shouldn’t care what
I look like; it isn’t important.
Isaac in Control
Isaac takes it in stride. The restrictions and his daily routine ...I’m just a kid who
would throw many children. Isaac soaks and washes out his eyes loves sports. I have
every morning because he doesn’t make many tears and his eyes are
prone to infection. He needs 10 to 12 hours of sleep at night to stay
learned to never
healthy. He has trouble sleeping due to his nose and mouth repairs, underestimate myself.”
so he needs to log more hours to get adequate quality sleep. He has
to protect himself from overheating because he doesn’t sweat much. Isaac Wangen
During sporting events, his parents wet his skin and hair down with
water bottles to keep him cool.
In other ways, Isaac is typical for his age. He loves sports
– especially wrestling. He has been in five state tournaments and
recently placed fourth in one. He loves to fish, play drums and bells, and draw cards. He loves animals and his
family. And he has maturity beyond his years.
“People shouldn’t care what I look like; it isn’t important,” says Isaac. “This condition is harmless as far
as I’m concerned. It doesn’t hurt me in any way. I’m just a kid who loves sports. I have learned to never
underestimate myself. I just keep on trying to do the things I like.”
Kim credits a strong support system – family, a close-knit community and church – with helping the family
during the last 11 years.
“The old saying ‘It takes a village to raise a child’ is so true,” she says. “Everybody was there for us when we
brought Isaac into the fold, and they have been there the entire journey, offering help, love and humor. Arleigh
and I learned to face everything together, as a team. When one of us was down, the other one was usually up
and could keep us both going.”
She also cites proximity to Mayo Clinic – only 40 miles from the family farm between Sargeant and
Brownsdale, Minn. – as a godsend.
“We meet people from all over the country and the world who travel miles and miles to seek treatment and
hope at Mayo Clinic,” she says. “We thank God all the time that we are able to access this facility with such ease
and from such a short distance.”
Spring 2008 25
A Salute to our Graduating Seniors
Michael is from East Berlin, Pennsylvania, and will graduate from Bermudian Springs
High School. Michael was voted the 2008 Class Clown. He ran at the state championship
in cross country his 10th and 12th grade years and was a member of the National Art
Honor Society this past year. Michael likes to play the guitar, run, lift weights and hang
out with his friends. He plans to attend Shippensburg University to study exercise
science. He would eventually like to become a personal trainer and own his own gym.
David is from Wheaton, Illinois, and will graduate from Wheaton Warrenville South High
School. This AP and Illinois Scholar and Eagle Scout was a four-year member of the Tiger
Marching Band, playing the trombone. He enjoys math, science,problem solving and
reading science fiction. During his 11th and 12th grade years, David was elected captain
of the chess team. He stayed busy working for the park district as a summer camp
instructor and traveling though Europe with a group of scouts. David would like to
attend a university and study biomedical engineering and eventually work as an engineer
to make discoveries in the medical field to improve patients’ hospital experiences.
Christopher is from Hastings on Hudson, New York, and will graduate from Hastings
High School. He is an avid guitar player who enjoys athletics such as hiking, skiing, and
ultimate Frisbee. Christopher is involved in a peer mentoring program and has done
community service projects for the environment and Habitat for Humanity. He plans to
attend college to study biology, music, and environmental science.
Joni is from League City, Texas, and will graduate from Pine Drive Christian School. She
enjoys hanging out with her friends, swimming, going to water parks, and shopping.
Joni was on the honor roll and has completed more than 100 community service hours.
She plans to attend Alvin Community College and receive a degree in nursing. Her long
term goals are to get married, have a successful career and pay cash for a nice house.
26 Spring 2008
Andrew is from Pembroke, Massachusetts, and will graduate from Pembroke High
School. Andrew is outgoing and laid back and loves to play the guitar in his bands. He
spent most of his high school days in Drama Club and the Music Department. He also
learned that your parents are usually right, so listen to them! After graduation, Andrew
plans to go college and major in mathematics and then go to graduate school and major in
music and nursing. His long term goals are to make a difference and help people.
Nick is from Rainsville, Alabama, and will graduate from Plainview High School. He
was voted most dependable in his class, participates in church dramas, loves to work on
vehicles, go 4-wheeling and play football. Nick received the American History Award
for Woodmen of the World and was the sound technician for the Plainview High School
Players (drama club). He did a two-year study in Automotive Technology and is a
Beta Club member. Nick plans to attend Gadsden State Community College to study
Brittany is from Leesburg, Georgia, and will graduate from Lee County High School.
Brittany is a Christian who is very bubbly and loves baseball and football. She is active in
FEA and FCCLA, winning gold in regional and silver in state for star events for FCCLA.
She just started on her dental work and although it will be awhile before it is finished, she
is looking forward to having the gorgeous smile that she always wanted. Brittany will go
to Darton and get her degree in education.
Jeremy is from Worcester, Massachusetts, and will graduate from North High School.
He is passionate about music and songwriting and plays the guitar. He learned to play
the piano his junior year and is now the teacher’s assistant. Jeremy plays paint ball and
manages the website of a local ATV club in which he is a member. He was chosen by his
principal to be on the Superintendent’s Advisory Council for his high school and city.
Jeremy will attend Berklee College of Music in Boston with the goal of someday teaching
music privately or at the college level.
Spring 2008 27
Jonathan is from Warren, Ohio, and will graduate from LaBrea High School. He is an
Eagle Scout who plays X-Box with kids all around the world. He likes music, animals of
any kind and his ski team. Jonathan plans to go to a technical college to learn computer
technology and networking and hopes to land a good job in air-conditioning!
Kyle is from Meeteetse, Wyoming, and will graduate from Meeteetse, High School.
He enjoys being with his friends, learning new things, and helping others. Kyle has
participated in many service projects and activities. He also loves acting and participates
in plays. Kyle is interested in science, medicine, drama, and film. After graduation, Kyle
plans to attend Casper College and pursue his education in science, medicine, drama,
David is from Bryan, Texas, and will graduate from Bryan High School, where he is
active as the secretary in the Tech Academy Student Organization. David is a member of
the National Honor Society. David is active in his church when he has led worship and
performed service projects. After graduation, David plans to go to college and major in
David Sadowski, Jr.
David is from Perry Hall, Maryland, and will graduate from Redeemer Classical
Christian School. He enjoys the private school atmosphere where he got to know his
teachers and other students. David has made the honor roll for the past three years and
has received a Choir Achievement Award. He enjoys bowling, singing, acting in the
school play, zycnzj.com/http://www.zycnzj.com/
and attending the youth group at his church. David has played the violin
for ten years and the viola for one year. He plays in the Peabody Preparatory Symphony
Orchestra. After graduation, David plans to attend Towson University or the University
of Maryland to major in computer science.
28 Spring 2008
Caitlin is from Brooklyn, New York, and will graduate from Dominican Academy. She
is a ski racer with the United States Ski Team. She volunteers for the Wounded Warrior
Project. This program teaches soldiers returning from Iraq who have lost limbs to ski.
She is also active in Adaptive Sports Foundation as a mentor and ski instructor. Caitlin
is a member of the National Honor Society and is active in the yearbook, the newspaper,
the Campus Ministry, and prom committee. After graduation, Caitlin plans to travel to
Chile as part of the ski race team then go to medical school and become a doctor.
Ryan is from Sandy Hook, Connecticut, and will graduate from Newtown High School.
During high school, Ryan has performed in four musicals. He has auditioned and
performed in the Connecticut Western Region and All-State choirs. Ryan enjoys playing
the piano, singing, and participating in musicals. He is also interested in technology.
After graduation, Ryan plans to attend a four-year college and study music education.
Courtney is from Brandon, Florida, and will graduate from Brandon High School. She
participates in the JROTC program and is a member of the JROTC drill team. Courtney
is also a member of the National Honor Society and serves as the second vice president.
She is a member of the cross country team. After graduation, Courtney plans to attend
University of Central Florida to major in mechanical engineering. She wants to help the
environment by creating alternate fuel sources for vehicles.
Timothy is from Titusville, Florida, and is home schooled. He is involved in a dual
enrollment program at the Brevord Community College where he made the Dean’s
List. Being home schooled allowed Timothy the opportunity to pursue his interest in
art. It also taught him time management and allowed him time to help his father with
his business. Timothy’s favorite hobby is to design and build new systems for his truck.
He is currently designing and patenting a new clutch system for motorcycles. Timothy
plans to attend Savannah College of Art and Design and major in industrial arts.
Spring 2008 29
From the Mailbox
Josh is from Cedar Rapids, Iowa, and will graduate from Prairie High School. He loves
the Dallas Cowboys, the New York Yankees and to play poker and bowling. He has
been a varsity bowler for the last four years and is currently the co-captain. He averages
a score of over 200 and has bowled a perfect 300 game. After graduation, Josh plans to
attend Kirkwood Community College then transfer to the University of Iowa and major
in computer programming.
From the Mailbox
Yesterday morning, as Carver came downstairs ready
for school I noticed he did not have his dentures in. I
asked where they were and he said he did not find
them in the denture cup. He was clueless. Well, the bus
was about to arrive and off he went.
I called the school office and asked to talk to
Carver further about his dentures. He then realized
that the day before, he took his teeth out to eat his
school lunch and placed them in his brown lunch
bag as to keep in a safe place for after his meal. He
had a sore spot and it was uncomfortable to eat with
the dentures. He now realized that he accidentally
threw the bag away. (Now, he does not do this often
as he has had this set of dentures for 4 years now with
adjustments along the way. Believe me; he would
have lost them a long time ago had this been a typical
After talking with Carver, I asked to talk with the
school secretaries and learned that the trash is picked-up every morning around 6 a.m. So, it had already been
taken to the landfill! I called my neighbor whom works for the trash company. She called the driver and found
that he was unusually late this day and could not pick up school trash for another hour! Oh my gosh! I jumped
in the car and headed over to the school trash bins. I picked out garbage bag after bag in search for all of the
homemade lunches in brown bags. After the fifth bag, I FOUND THE DENTURES along with a 90% eaten bagel
sandwich. They were safe. $6,000 rescued!
I entered Carver’s gym class and had a discussion with his gal pals and asked them never to let Carver take
out his teeth again. I then proceeded to the school office and proclaimed my golden find. Yippppeeee! Thank
GOD for the “late pick-up”.
30 Spring 2008
The 27th Annual National Foundation for Ectodermal
Dysplasias National Family Conference
If you attend this Family Conference, you will benefit from: Coralville Marriott Hotel
• Stimulating discussions, medical, dental and research updates. & Conference Center
• Sharing personal connections with others who understand.
• Meeting others to exchange ideas, support and advice. Coralville, Iowa
• Gaining knowledge of helpful products and resources.
• Participating in research to advance our understanding of the ectodermal dysplasia syndromes.
Registration at the conference begins on Thursday, July 24 from 9 - 11 a.m., with the conference starting at 1
p.m. on Thursday. The conference will conclude on Saturday, July 26th at 3:30 p.m.
Special educational and social programs for the affected children and their siblings are an integral part of the
conference. Each day, the children enjoy activities, entertainment, educational programs, and refreshments.
Workshops and General Sessions are
led by members of the NFED Scientific Program At-A-Glance
Advisory Board who are experts in
their field. Topics may include: Thursday, July 24th
• Complex Dental Treatment 9 – 11 a.m. Registration
in Adolescence 11 a.m. – 1 p.m. Lunch on your own
• Dental Care and Prevention 1 - 3:45 p.m. General Session
• Dental Implants 3:45 - 5 p.m. Workshops
• Development and Behavior 6 - 9 p.m. Dinner / Family Social
• Ears, Nose, and Throat Friday, July 25th
Care 7 – 9 a.m. Breakfast
• Effective Communication 8 a.m. – 12 p.m. Research / Clinical Consults /
• Resource Sharing and Getting Chance Auction Bidding
all of that Organized
12 – 1:15 p.m. Lunch
• Emotional Well Being: Your
1:30 – 2:30 p.m. General Session
Own and Your Kids’
2:30 – 3:45 p.m. Workshops
• Eye Care
3:45 - 4 p.m. Break
• Genetic Testing
4 - 5:15 p.m. Workshops
• Insurance Issues
5:30 - 6:45 p.m. Dinner
• Men’s Issues
7 p.m. Talent Show / Chance Auction
• Nutritional Concerns
• Pediatric Concerns zycnzj.com/http://www.zycnzj.com/ Issues
9 - 10:15 p.m. Women’s
• Skin, Hair, and Nail Care
10:15 - 11 p.m. Women’s Social
• Syndrome Specific Sessions
• Women’s Issues
Saturday, July 26th
To view complete workshop 7:30 – 9 a.m. Breakfast
descriptions, visit www.nfed.org. 9 a.m. - 12 p.m. Syndrome Specific Workshops
12 - 1:30 p.m. Lunch
1:30 - 3:30 p.m. General Session
Children perform / Goodbye
Registration Fees accessible rooms are available upon Talent Show at this year’s National
The conference registration fee of $175 request. Family Conference. It has become one
for adults and $100 for children (age of the highlights of the Conference. The
13 and under) includes admission to Kids’ Camp Talent Show is open to children and
all General Sessions and Workshops, To support children affected by ED adults of all ages.
conference materials, Kids’ Camp and and offer programs that nurture Given the number of participants
teen program for children age 18 and their self-esteem, Kids’ Camp and in recent years, we must limit all acts
younger, dinner on Thursday night, the teen program will be held at the to three minutes. In order to allow
breakfast, lunch and dinner on Friday, hotel while parents attend sessions. everyone who wants to the chance to
and breakfast and lunch on Saturday. Garen and Susan Gouveia, the perform, we will only allow one act per
Not included are all other meals, hotel owners of Corporate Kids Events person/group.
charges, and general transportation. (CKE), are carefully planning camp Bring your guitar, tell your best
All family members participating in activities for ages 0-18. Support arises joke, or sing your favorite song!
conference activities (including meal) spontanously as the children interact Whatever your talent is, we’d love
must register. with others who are affected by ED, to have you share it with the group.
as well as their siblings. Creative We will provide a CD player. Plan to
How to Register arts and activities are interspersed bring any other props, costumes or
Read the registration instructions throughout the weekend as part of this instruments you might need for your
carefully. Return your completed support program. performance. If you have questions,
registration form and payment to the CKE has organized and managed contact Jodi at the NFED office.
NFED postmarked by July 1, 2008. camps for children of all ages for more
NFED than 19 years. All CKE counselors Chance Auction
P.O. Box 114, 410 East Main St. are certified in CPR and First Aid You can participate in our 5th Annual
Mascoutah, IL 62258-0114 USA and take part in an extensive training Chance Auction on Friday morning.
program. They are fingerprinted and Families reported having a great time
Cancellations background checked. Parents will at last year’s auction, which raised
Cancellations and refund requests be required to complete and return more than $700 for the NFED!
must be made to the NFED by June 27, permission and emergency consent Here’s how it works. A Chance
2008. No refunds will be issued after forms for each child who participates. Auction is a hybrid between a raffle
July 1, 2008. Upon receipt of your completed and an auction. Families are asked
registration, the NFED will send a to bring and donate one new item
Hotel Reservations conference confirmation packet. Kids’ (or more!) for the auction. You might
Deadline: July 1, 2008 Camp and teen program is available at consider asking a business in your
Coralville Marriott Hotel & Conference no additional cost for children who are area to donate the item that you bring.
Center 18 years of age and younger. Please know that bringing an item is
300 East 9th Street NOT mandatory.
Coralville, IA. 52241 Directions Items can be anything of any value
Phone - 319-688-4000 From Cedar Rapids (CID) airport from a squirt bottle for a child to a
The hotel is 20 miles SE from the basket of bath products for an adult.
Individuals are responsible for making airport. Last year, Spiderman items were big
their own guest room reservations. All with the boys while the girls loved
reservations must be made directly Follow IA-84 (1 m). Merge onto I-380 the Barbie dolls. We have people of
with the Coralville Marriott Hotel & S and travel for 13.9 miles. Merge all ages attending. You may consider
Conference Center. The Coralville onto I-80 E (4 m). Take exit 242 toward bringing an item that is indicative of
Marriott Hotel & Conference Center Coralville. Turn right onto 1st Avenue. your area, such as maple syrup from
has offered NFED conference guests a Left onto East 9th Street. New England.
special room rate of $109 per night. To Attendees can purchase 2-part
make a reservation, please call (319) Estimated taxi fare: $60 USD (one way) numbered tickets and “bid” on a
688-4000 and use the initials “N.F.E.D.” zycnzj.com/http://www.zycnzj.com/ specific item by dropping one part of
to indicate that you are a part of the Attire their ticket in the container placed next
NFED Family Conference to receive Casual attire is appropriate for the to the item. At the end of the evening,
the special group rate. Reservations entire conference. Please dress your a winning ticket will be drawn for each
must be made on or before July 1, 2008, children for play. Conference rooms item. Tickets will sell two for $1.
to receive the discounted rate. tend to be chilly, please plan accord- Plan now for what items you
The Coralville Marriott Hotel & ingly. can donate! There will be a table
Conference Center is a nonsmoking at registration on Thursday of the
hotel and offers an indoor swimming Talent Show conference where you can submit your
pool and a fitness room. Handicap We are proud to once again host the donated item(s).
NFED National Family Conference July 24-26, 2008 Coralville, Iowa
Please Type or Print
Name _______________________________________ Address ___________________________________________
City _________________________________________ State ______________________Postal Code ____________
Country _____________________________________ Phone _____________________________________________
E-Mail Address ___________________________________________________
I give permission to the NFED to distribute my name and contact information to the other conference attendees.
Names of Persons Attending Adult Child Age of Will need Affected
each child child care by ED
___________________________________ ________ ________ Indicate the ED Syndrome
___________________________________ ________ ________ Which Affects Your Family
___________________________________ ________ ________ _________________________
___________________________________ ________ ________
___________________________________ ________ ________
Registration Fees (*Deadline July 1, 2008) registration fees with
Conference Registration your completed form
Number of Adults (14 and up) __________x $175 USD = ____________ to
Number of Children (age 13 and under) __________x $100 USD = ____________ NFED Family
(*Registration fees double after July 1, 2008 deadline.) Conference
410 East Main St.
We cannot attend but would like to donate .O.
P Box 114
to help defray expenses for the conference. = ____________ Mascoutah, IL
TOTAL AMOUNT = ____________ 62258-0114
Method of Payment (check one) Bank Check Master Card Visa Registration Deadline
July 1, 2008
American Express Discover
Credit Card Number _______________________________Exp. Date ____________ Call the NFED at
Print Cardholder’s Name as on Credit Card __________________________________ 618-566-2020.
I /We plan to perform in the Talent Show on Fri. evening. Name(s) ________________________________________
List Your Talent (play instrument/sing/read poem/skit/etc.) _________________________________________________
Photo and Video Permission Release
I hereby give my permission to the NFED to use and distribute (including but not limited to use in newsletters, guides,
appeals, web site, and reports), at their discretion, any photographs or video tapes taken at the 2008 NFED National Family
Conference in which I or members of my family may be a part.
Signature _______________________________________________________ Date _________________________________
In consideration of the acceptance of this registration entry, I/we the undersigned, assume full responsibility for any injury or accident
which may occur while I/we am/are attending this conference. I/we hereby release and hold harmless the sponsors, promoters and all
other persons and entities associated with this event from any and all personal injury or damage, whether it be caused by negligence of
the sponsors, promoters or other persons or entity. Applications for minors will be accepted only if signed by a parent or guardian.
Signature _______________________________________________________ Date _________________________________
(Please complete other side.)
During the conference, participants will choose the workshops they would like to attend. In order
to participate in clinical research or consults, you must sign-up prior to the conference. Your
scheduled clinical research and consult times will be given to you in the registration materials you
recieve at the conference.
Clinical Research and Consults
The following projects will be offered to aid researchers and the NFED in their quest to better
understand the ED syndromes. Sign-up is required.
Burden of Cutaneous Disease in Ectodermal Dysplasia Patients and Families
Suephy C. Chen, MD, MS, Assistant Professor, Department of Dermatology, Emory University
Dr. Elaine Siegfried, Saint Louis University School of Medicine, St. Louis, Missouri and Dr. Alanna Bree,
Baylor College of Medicine Texas Children’s Hospital, Houston, Texas
Ear, Nose and Throat Consults
Dr. Raj Sindwani, Saint Louis University School of Medicine
Oral Development / Dental Consults
Clark M. Stanford, DDS, PhD, Centennial Fund Professor, University of Iowa
Do Children with Ectodermal Dysplasias Have Differences in Quality of Life: An Application of an
Age Specific Child Oral Health Related QOL Assessment Instrument?
Clark M. Stanford, DDS, PhD, Centennial Fund Professor, University of Iowa
This is your chance to take advantage of services for you or your child while helping researchers find
answers to ED questions. We must schedule appointments for the clinical research projects and the
consults. To do so, we must know if you plan to participate. If you have questions, contact Mary Fete
at the NFED, 618-566-2020.
Yes , I will participate. Please sign me up for the following:
Name Burden of Dermatology Ear, Nose Oral Quality of
Cutaneous and Throat Development Life
Ectodermal Dysplasia Group Leaders from around the world met at the
International Conference on Ectodermal Dysplasias Classification in March
and discussed ways to share information about the ectodermal dysplasia
syndromes and the services that each organization provides to its families.
May 30, 2008
May 31, 2008
18th Apple Classic
June 6, 2008
No Sweat Campaign
June 15, 2008
Lake Placid, New York
Pictured from left to right - Olivia Niclas, France; Mary Kaye Richter, USA;
Diana Perry, United Kingdom; Andrew Williams, Australia; Andrea Burke, 27th Annual National
Germany; Hilde Nordgarden, Norway; Helen Kenzler, Sweden; Ulrike Holzer, Family Conference
Austria; Encarna Guillen-Navarro, Spain July 24-26, 2008
Rally for Ally
OzED August 9, 2008
2008 Family Camphrence 8th Annual
October 4-5, 2008 Halloween Bash
Western Australia (WA) October 29, 2008
Point Walter Camp – Perth New York City, New York
This camphrence is being organized by WA Representative Leanne
Lewis, who will be happy to assist you with further information. Board of Directors
Phone (08) 9454 4967, Email firstname.lastname@example.org Retreat and Meeting
November 7-8, 2008
An obligation free EOI has been sent out, so please let us know your St. Louis, Missouri
interest to assist us in planning funding and other requirements.
A DVD of the 2006 family camp is now accessible on the website www.
ozed.org.au so have a look and see what you can be doing the first
weekend of October.
Expressions of interest should be forwarded to ozED to email@example.com.
Spring 2008 35
Olivia Daniels of
Wisconsin and her
Billion Dollar Smile.
The Billion Dollar Smile celebrates
individuals affected by an ED syndrome
who have recently received dentures
or who are finding success with their
dentures. If you would like to show off a
Billion Dollar Smile, send a photograph to
the NFED office and share your story.
UNITED STATES OF AMERICA
PERMIT NO. 13 MASCOUTAH IL 62258-0114
U.S. POSTAGE PO BOX 114 410 E. MAIN ST
NATIONAL FOUNDATION FOR