Newsletter of the National Foundation for Ectodermal Dysplasias

The Educator
Newsletter of the National Foundation for Ectodermal Dysplasias
Summer 2010
As I See It...
By Mary Kaye Richter
P.O. Box 114, 410 E. Main St.
Mascoutah, IL 62258-0114 USA
Phone - 618-566-2020
Fax - 618-566-4718
Web Site - www.nfed.org
E-mail - [email protected]
STAFF
Mary K. Richter, Executive Director
Carol Agne, Director of Development
Kelley Atchison, Director of Family Support and Outreach
Jodi Edgar Reinhardt, Director of Public Relations
Mary Fete, R.N., M.S.N., C.C.M., Director of Research
Harry Ford, Director of Institutional Development
Malinda K. Heuring, Director of Education
Beverly A. Meier, Director of Finance and Records
Jackie Schmitz, Office Administrator
BOARD OF DIRECTORS
George Barbar
Rick Emery
Frank H. Farrington, D.D.S., M.S.
David Freestone, M.D.
James L. Gehrs, D.D.S.
Keith Geismar
Paul Hamm
Donald V. Huebener, D.D.S., M.S.
Pam Kennedy
Jack Kriz
Kevin Pawlow
Brian F. Randall
Garrett C. Reuter
Mary Kaye Richter
John A. Stith, M.D.
Sarah Tevis Poteet, D.D.S.
Keith Throm
Anil S. Vora
MEMBER EMERITUS
John E. Gilster, DDS
SCIENTIFIC ADVISORY COUNCIL
Alanna F. Bree, M.D., Dermatology Specialists of Houston
Timothy J. Fete, Sr., M.D., M.P.H.,
University of Missouri-Columbia School of Medicine
Dorothy K. Grange, M.D., Washington University
School of Medicine
Brody J. Hildebrand, D.D.S., M.S., Baylor College of Dentistry
Maranke I. Koster, Ph.D., University of Colorado Denver
Richard A. Lewis, M.D., M.S., Baylor College of Medicine
Kathleen Motil, M.D., Ph.D., Baylor College of Medicine
Jill Powell, M.D., St. Mary’s Health Center
Elaine Siegfried, M.D., Saint Louis University School of Medicine
Raj Sindwani, M.D., Cleveland Clinic Head and Neck Institute
Clark Stanford, D.D.S., Ph.D., University of Iowa
Margot B. Stein, Ph.D., University of North Carolina, Chapel Hill
Lina M. Moreno Uribe, D.D.S., Ph.D., University of Iowa
J. Timothy Wright, D.D.S., M.S., University of
North Carolina, Chapel Hill
EMERITUS CHAIR
Ronald J. Jorgenson, D.D.S., Ph.D.
The Educator
Newsletter of the
National Foundation for
Ectodermal Dysplasias
The Educator is published four
times a year by the National
Foundation for Ectodermal
Dysplasias (NFED). The
content of The Educator is
for information purposes
only. Questions concerning
specific patient issues should
always be directed to appropriate
professionals for resolution. The Foundation’s logo and newsletter
material may not be reproduced without permission.
Founded in Mascoutah, Illinois, in 1981, the NFED is a
tax-exempt, not-for-profit organization pursuant to Section 501(c)3
of the Internal Revenue Code.
2
When told it was time to write my column
for the newsletter, I really struggled for
a topic. Then I was reminded of a recent
experience and the writing became easy.
But rather than start at the beginning,
I’d prefer to bring you to the close of the
chapter first. I’ve written about our son,
Charles, many times, be it his success at
wearing dentures, his prowess on the
soccer field, his close ties with his nieces
and nephews, his critical role on the family
farm or the fact that he is one of the most
decent human beings I know. Yes, he’s
my son and it is unlikely that I would say
anything bad about him. But, there were
times when I sometimes wondered if he
was doing as well as it seemed. Was this
happy-go-lucky, do-it-all kid hiding deeper
and different emotions?
At times, some folks have been a little
less enthusiastic about my approach to
ectodermal dysplasia. Some may think I see
everything through rose-colored glasses to
which I’ve always responded that it’s more
helpful to be positive than negative. But
recently, Chuck and I had an experience I
want to share with you as it was as gutwrenching as it was ultimately uplifting.
The story begins with a visit to Boston for
Charles and me to meet with the Board of
Directors of Edimer Pharmaceuticals. Their
request was to hear our perspectives of
ectodermal dysplasia and our impressions
of the potential for the research work
they are doing. Thinking I had been at
my rhetorical best, I gave the floor to my
son after I had shared some stories of our
experiences with his childhood and with
the evolution of the NFED. Little did I know
that the most profound rhetoric was yet to
come.
Chuck had worked with Jodi at the NFED
office to develop a framework around
which he would speak. He talked of
learning to wear dentures and of the
embarrassment of drinking Ensure for
lunch at school when he was in the process
of getting dental implants. He talked of
stares and the accommodations he had to
make in order to participate in sports. He
talked openly about the condition and its
impact on his life. He finished by thanking
the Board members for the opportunity to
speak and for their interest in developing
a new treatment that could bring an end
to most of the problems associated with
hypohidrotic ectodermal dysplasia. And
The Educator
then he said, “It
will be a wonderful
thing for the next
generation not to
have to deal with
this torment.”
Torment. It was not a word I ever heard
him use. My heart wrenched and ached in
a way I had never known. I mentioned it to
a couple of staff members but was afraid to
talk to him as I didn’t know if the word was
used to impact his audience or if it was an
honest expression that came from his heart.
In retrospect, I had a bit of fear as to what
his response may be. I agonized over the
comment for several months and then finally
broached Chuck about it wanting to know
from whence it came.
He talked about the day of the meeting
and thinking about experiences he had
had that caused him some obvious pain.
Whether it was someone asking him how
he got the black eye or amazement that
he wore dentures, the reminders that he
wasn’t “normal” were at times unwelcomed.
He indicated that even he didn’t know
quite where “torment” came from, it just
erupted. As we talked, it was clear that
the wonderfully confident young man we
have known was still right where he always
had been. But it also left me with a clearer
understanding that even on the best days,
there may be wishes that things were
different. I’ve often talked about open and
honest communication, and this was one
of the times that it really paid off. He was as
ready to share his feelings as I was to hear
them.
As I See It, most of us have a torment that
we carry around. Whether we wish we
were thinner or taller or more talented or
smarter…or if we are affected by a condition
like ectodermal dysplasia. I have a quote on
my desk from John Wooden which says, “The
people who turn out best are those people
who make the best of the way things turn
out.” So while Charles may have experienced
some torment, he’s also done an outstanding
job of making the best of the way things
turned out. The happy-go-lucky, do-it-all kid
is there, and he is emotionally strong both
outwardly and inwardly. There is something
for us all to learn from this, something to
carry with us and something to cherish on
days when life doesn’t go quite as planned.
While there may be torment, we cannot let it
define who we are.
Summer 2010
NFED Awards $10,000 to Six
Outstanding Scholars
The L. Marie Heard Education Scholarship Program is a proud tradition at the
NFED in which we recognize outstanding students affected by ectodermal
dysplasias. A dedicated group of volunteers had difficult decisions to make
with how to award $10,000 with so many deserving applicants. Applicants
were judged on demonstrated academic ability, an essay, financial need,
extracurricular activities, community involvements, recommendation letters,
and NFED activities.
Join us in celebrating our shining scholarship winners:
2010 Clarence and Marion Bayles Scholar
Michael Putney, Pennsylvania
University of Minnesota-Duluth
Free Topical Calls on
Topics That Matter
to You
Can’t make it to a Family Conference this year? We
have two more Topical Conference Calls scheduled
for this year that will give you information on a
variety of topics that are often addressed at a
Conference. Join us for these free, one-hour long
workshops. All calls will take place on Tuesdays at
5 p.m. Pacific / 6 p.m. Mountain / 7 p.m. Central /
8 p.m. Eastern. To register for any of these Topical
Conference Calls, email Kelley at [email protected]
or on the NFED Web site.
The Big Three: Skin, Hair and Nails
Major: English - Pre-Grad Studies
September 7
Presenter: Alanna Bree, M.D.
2010 Ethelyn Draser Boyd Scholar
Dermatology Specialists of Houston
Ryan Allen, Texas
Changes in the skin, hair and nails are typical in
people affected by ectodermal dysplasias. These
changes can have a significant impact on those
affected by them, and they can also help clinicians
diagnose what type of ectodermal dysplasia a
patient is affected by based on what changes
they see. We will discuss the changes in the skin,
hair and nails that help define the ectodermal
dysplasias and discuss tips for treatment of these
changes.
Major: Aerospace Engineering
2010 Louis J. and June E. Kay
Scholars
Jordan Dahl, Minnesota
Major: Engineering or Pre-Med
Caitlin Sarubbi, New York
Harvard
Chat with Mary Kaye Richter
Major: Biology
November 2
Presenter: Mary Kaye Richter
Parent, NFED Founder and Executive Director
Scholars
You will have the opportunity to ask whatever is
on your mind regarding ectodermal dysplasias or
the NFED.
Jacinda Kinnunen, South Carolina
Greenville Technical College
Major: Massage Therapy
Miss A Conference Call?
Alexa Stone, Alberta, Canada
Lethbridge College
Find these recordings on the NFED YouTube
Channel.
Engineering Design and Drafting
Technology
Summer 2010
The Educator
•
EDI200 (X-Linked HED Treatment) and NFED
Patient Registry
•
Ear, Nose and Throat Concerns
•
School Accommodations for Children Affected
by Ectodermal Dypslasias
3
Medical Article
Cooling
Taken from A Guide to the Skin, Hair, and
Nails in the Ectodermal Dysplasias
Sun Safety
While medical experts continue to warn
everyone about the dangers of being in
the sun without using sunscreen, people
with ectodermal dysplasias who have pale
skin are especially vulnerable to sunburn.
Sunscreen with a sun protection factor
(SPF) of 15 or higher should be used on all
areas of the body that may be exposed to
the sun for 10 minutes or more. Sunscreen
should be applied liberally, at least 30
minutes before sun exposure.
An important characteristic of a good
sunscreen is staying power. The best ones
are rub-proof and waterproof, although
these should be reapplied after 60 to
90 minutes of swimming. The optimal
sunscreen also should have a moisturizing
base and be easy to apply. Examples of
sunscreens to consider are Bain de Soleil,
Le Sport, Durascreen, Pre Sun 30 and
Ombrelle Extreme.
Formulations of sunscreens change
frequently, so read labels carefully. For
people who experience stinging or rash
from sunscreens, try products that do not
contain PABA.
It’s also important to note that sunlight
can penetrate thin, loosely woven
clothing. So sunscreen should be applied
even to covered areas. Some clothing
(such as Land’s End Super-Tee or Haynes
Beefy-T, Solarweave, and Solumbra ) can
provide an SPF of 30, even when wet.
Swimming
Swimming is an ideal activity for people
with ectodermal dysplasias because cool
water reduces the body heat produced by
exercise. Care must be taken, however, to
prevent skin drying. To protect skin, apply
a moisturizer such as Curel, Eucerin cream,
or Lubriderm and a waterproof sunscreen
before swimming, rinse off chlorinated
water as soon as possible, and reapply
moisturizer while the skin is still wet.
Sweating
As mentioned above, people with
some types of ectodermal dysplasias—
including HED—cannot sweat to cool
4
their bodies when exposed to warm or
hot environments. The inability to sweat
is caused by a decrease or total absence
of sweat glands, a condition which can
be determined by a skin biopsy of the
scalp. This procedure may be done by a
dermatologist.
Fortunately, in some cases, those who
have HED may find that their ability to
sweat improves during adolescence.
However, all people with decreased or
absent sweat glands can easily become
overheated.
The good news is that individuals
with ectodermal dysplasias are able to
engage in most activities, including team
athletics. It is important, however, to be
aware of the possibility of overheating
and if overheating occurs, to treat it
immediately. Prolonged elevation of body
temperature is dangerous and can be lifethreatening.
What Are The Signs of Overheating?
It doesn’t take long for a parent or
caregiver to recognize when a child
is overheating. Parents of children
affected by ectodermal dysplasias often
mention reddening of the ears as an early
indicator. A head warm to the touch
is another frequently mentioned sign.
Irritability and lethargy may follow. More
serious situations can be accompanied
by dizziness and/or nausea and may
serve as a precursor to heat stroke. Heat
stroke is a life-threatening emergency. If
mild dizziness or nausea is present, treat
aggressively with cool liquids to drink;
a cool bath or ice packs placed at the
armpits and groin; and resting in a shady,
cool area. If confusion, disorientation,
fainting or vomiting occur, call 911 and
treat as above while awaiting emergency
personnel.
Can Brain Damage Occur Because of
Overheating?
The quick answer is “yes”. This is rare,
usually in individuals who have not
yet been diagnosed with ectodermal
dysplasias and who are not aware of the
risks of high fever. If you are aware of the
information regarding overheating in this
article and follow the recommendations,
the risk of brain damage is extremely
slight. Normal body temperature is
around 97-100.5 degrees F. It is important
The Educator
to remember that children with routine
illnesses commonly have fevers reaching
104-106 degrees F with no ill effects.
Will Children Who Can Not Perspire
Know Whether or Not They Are
Overheating?
This is a concern for most parents; but
individuals with experience can share
countless stories which indicate that
children who cannot perspire feel heat
just as adults do and instinctively seek
relief. There are some children who may
not want to acknowledge that they are
hot. However, experience has shown that
they catch on quickly and soon learn
helpful cooling techniques. It’s amazing
how they will seek out shade or use
resources at hand. Young baseball players
have sought the shade of a power pole in
the outfield, toddlers have used popsicles
for head coolers, and others have sought
the coolness of a linoleum floor by laying
on it. Some kids wear dampened shirts or
caps, some carry squirt bottles, and others
plan their activities to limit exposure on
days with very warm temperatures.
There are families who choose to visit
amusement parks or zoos on cloudy
days—often when they are least
congested, which gives an added bonus.
The important tactic is to plan for safe
outings using whatever precautions are
deemed appropriate for the situation. As
the child grows, families may want to act
as chaperones on school outings. When
school buses that are not air-conditioned
are used for field trips, parents may find
it useful to accompany the group in a
separate vehicle just in case a source of
air-conditioning may be needed.
Does The Need For Cooling Change
Over Time?
Families experienced with ectodermal
dysplasias tell us that the greatest
difficulty with the heat seems to be
present in younger children, from birth to
five or six years of age. Why the difficulty
seems to lessen with age is anyone’s
guess. Some surmise that increases in
body size with age and growth may play
a role. Others think that children learn
to do a better job of managing their
activities and thereby function better
in warm environments. A number of
adults affected by ectodermal dysplasias
indicate that changes at puberty include
Summer 2010
a new ability to minimally perspire on the
palms of the hands and soles of the feet.
Most children affected by ectodermal
dysplasias learn to manage their inability
to perspire as they age.
Can Children Affected By Hypohidrosis
(The Inability To Perspire) Participate In
Sports?
The NFED has ample evidence of
individuals who have successfully
participated in athletics including
football, basketball, baseball, track, soccer,
gymnastics, swimming, martial arts,
bowling, etc. Included in that number are
some individuals who were extraordinarily
successful and deemed champions in
their sport.
Allowing children to try various activities
enables them to learn whether or not
they like the sport; how to accommodate
their inability to perspire; and when to
acknowledge that some activities may
require more than their bodies can
comfortably deliver.
Should We Move To A Cooler Climate?
While living in Alaska might seem
attractive, unless you have job portability,
such a solution may be impractical. In
reality, families affected by ectodermal
dysplasias live in every state and probably
every country on the globe. Folks living
near deserts or in the warmest of climates
have successfully accommodated any
cooling needs.
When Outdoor Temperatures Escalate,
Be Prepared.
•
Take a thermos of cool water or
spray bottle in the car just in case it is
needed.
•
Plan out-of-door activities on days
when risks can be minimized.
•
Access to shade and water is always
helpful.
•
If your child is an athlete, you may
find taking a golf umbrella, damp
towels in a cooler, and a squirt bottle
to be useful. It doesn’t take long for
active athletes to discover that a cool
squirt of water on the head or a damp
towel around the neck brings quick
relief. Others soak their hat or shirt
in water. Often times others, with
the ability to perspire, begin to bring
similar gear to athletic events as they,
too, learn the benefits of keeping
cool.
Summer 2010
•
Cool down the car before entering.
•
Don’t take unnecessary risks. Trips in
unairconditioned cars on warm days
are not appropriate. The same is true
for activities that require lengthy outof-door exposure with limited or no
access to cooling. Use good common
sense and you will get through each
warm day just fine.
Should the Child’s School Be AirConditioned?
The effects of warming on the body of
those who cannot perspire are such that
performance at school and on the job
can be adversely affected. As indicated
previously, irritability and lethargy are
common effects, which can inhibit
performance.
Schools are mandated by public law (P.L.
94-142) to provide special education and
related services for those with disabilities.
While that seems rather straightforward,
school administrators and school boards
are sometimes reluctant to provide what
many consider luxury. However, the
need for air-conditioning can be well
documented and should be provided to
assure that those affected by ectodermal
dysplasias can function appropriately.
Begin by talking with the school principal
and/or nurse to determine the procedure
you must follow. Do this well in advance
(at least six months) of the beginning of
school, as there may be a variety of delays
that can prohibit timely installation of
equipment. For additional information
and procedural suggestions, contact the
NFED office.
What Are “Cool Suits” Or “Vests”?
“Cool suits” would more properly be called
“cool vests”. There are several different
types, all of which consist of a product
that can be worn on the torso and in
some cases, the head as well. Generally,
they are vest-like in design. Some contain
packs that are frozen and then inserted
into a vest. These vests are often lightweight. Most cooling vests are custom
made for the wearer to assure proper fit.
Some companies also make products to
place around the neck or wrist and some
have insulated carrying cases, which keep
the products ready for use.
Are Cool Vests Used All Of The Time?
Generally, the bulkiness of most cool vests
make them impractical for constant use
The Educator
during routine day-to-day activity. They
can be cumbersome for small children
and may bring additional unwanted
attention to ectodermal dysplasias.
However, they can be quite useful in
certain special situations, i.e. lengthy
rides on unairconditioned buses, for
highway construction workers, as a
means of portable cooling for athletes,
etc. Familiarity with the various products
available will enable families to make the
cooling decisions which are best for them.
Where Can I Purchase Cooling Systems?
The Internet is a terrific resource for
locating companies that sell cooling
systems and products. The NFED also has
a list of companies who can provide these
products.
Is A Cool Vest Appropriate For My
Child?
A parent’s responsibility is to provide a
method of cooling which is appropriate
for that particular child. If there are
special circumstances where a cool vest
is necessary, then consider each type
available and acquire the one that is best
for the child. There are those individuals
who really like cool vests. One frequently
mentioned reason is peace of mind;
knowing that you can go anywhere and
not have a problem, unless the equipment
itself fails. And there are those people
who really do not like them. Here, the
reasons seem to center on a desire not to
attract additional attention, concern that
a child will become cool vest dependent,
and that cheaper, equally effective and
less cumbersome cooling methods are
available. If a spray bottle will enable a
child to participate in activities, find one
of a size and shape that will accommodate
that need. If family travel includes an
automobile ride on a hot summer’s day,
go prepared for any eventuality. There
are lots of choices and alternatives for
cooling. Base your cooling decisions on
your child’s needs and the best solutions
to meet them.
What Other Useful, Cooling Products
Are Available?
Families learn to be alert for the
development of new cooling products.
As technology improves, so does the
availability of useful products. In addition
to basic water bottles, spray bottles with
battery activated fans, fanny packs, and
gel strips are available.
5
Zach Throws out First Pitch at Astros Game
By Paul Hamm
On Sunday, June 6th, the Houston Astros did a big favor for the 2nd Annual Zach Hamm’s Don’t
Sweat It Golf Classic and our foundation. To help us raise awareness for the golf outing and the
NFED, Zach was chosen to throw out the ceremonial first pitch of the Astros versus the Chicago
Cubs game. Zach practiced his pitching for a month to insure that
he would throw a “strike”. It was a very exciting day and almost 230
of Zach’s closest friends, all wearing the 2nd Annual Don’t Sweat It
Golf Classic t-shirt, came to the game to support him.
My first pitch was incredibly
awesome! I threw a fastball to
Astros pitcher Bud Norris and he
told me, “That was nice buddy!” It
was a perfect strike. My interview
was very cool. I like being on
T.V. I enjoyed talking about the
NFED and my golf tournament.
I was a little nervous but very
proud. I really like it that my golf
tournament helps kids like me. I
am a very lucky kid!
Zach was introduced by the stadium announcer. As he was walking
to the pitcher’s mound, the announcer went on to say that Zach
was affected by a rare genetic syndrome known as ectodermal
dysplasia. The announcer followed with, “Zach is the host of the
Don’t Sweat it Golf Classic to support the National Foundation for
Ectodermal Dysplasias” and told the crowd of 35,000 that they
Zach Hamm
could go to www.dontsweatitgolf.com to get more information.
While Zach was strolling to the mound, the “Help Zach Fight for a
Cure” awareness notice I developed with the NFED staff was displayed on the Jumbotron scoreboard.
This notice will be shown at each Astros home game in July. He then delivered a perfect strike to
Houston Astros pitcher Bud Norris and received a huge round of applause from the crowd.
The Astros television staff had arranged for Zach to be the “Fan” of the game. In the fourth inning of
the Astros telecast, they interviewed Zach and I live on the air. The game was viewed in more than
80,000 homes. Zach was a very eloquent spokesman for the NFED and his golf tournament. It was a
very magical day for our son and our efforts to build Zach’s Golf Classic and help the NFED.
Bicycle Ride and Rally
Due to the nature of the NFED and the condition itself, our focus is narrow. A group
of people with a tight focus and intense concentration on specific results has to
support itself. We are driven and supported by grassroots initiatives and methods.
That is why our fundraising efforts are very much event-driven, and that is why your
family fundraisers and your support of all events are significant. Here is a new one.
Miles & Smiles
A Bicycle Ride and Rally to benefit the National Foundation for Ectodermal Dysplasias and Dental Treatment Centers at
Saint Louis University and Southern Illinois University
October 2, 2010
Start/finish - Scheve Park, Mascoutah, Illinois
First, the home-base St. Louis Region, then replicate the event at every treatment center site throughout the country. Next thing
you know, we’ll be having a good time with a healthy and fun event that yields six figures of funds to our Treatment Assistance
Program. That is a benefit for all!
We invite your support and participation. Come ride with us if you can. Support the inaugural event and the extended one in years
two and on. Suggest sponsors. Contact Harry with your suggestions and to get details on Miles & Smiles.
20th Apple Classic Nets $20,000
The NFED celebrated the 20th Annual Apple Classic Golf Tournament at Stonewolf Golf Club in Fairview Heights, Illinois, on one of
the hottest days of 2010 so far with temperatures reaching near 100 degrees!
Once the action on the course moved indoors, Dave Schumacher, a local radio personality, was the auctioneer. Without all income
and expenses booked at press time, we estimate that the tournament’s net income will exceed $20,000. In 20 years, the Apple
Classic has raised more than $415,000.
Thank you to all golfers who joined us in play. Thank you to the many volunteers from that day as well as the volunteer committee,
who has been planning for the event since last July. We made it through a challenging fundraising year, and are ready to begin plans
for the 21st annual tournament to be held at Stonewolf again on June 10, 2011 – save the date!
6
The Educator
Summer 2010
High School Student Raises $19,000 for Dental Treatment
For his senior project at Upper Arlington High School in Columbus, Ohio, Joey McGlumphy hosted a 5K race called “Miles for Smiles,”
on March 13. His event took benefited patients affected by ectodermal dysplasias. His mentor for this project was Dr. Lisa Knobloch
of the Ohio State University College of Dentistry.
Joey also established a development fund at the Ohio State University for patients with ectodermal dysplasia. Individuals with
ectodermal dysplasia needing to have a dental procedure done at the University, but lacking the money to have it completed,
can apply for funds out of this account. The first annual “Miles for Smiles” 5K race was a way to raise funds for this account while
creating awareness of ectodermal dysplasias. 100% of the profits from this event were donated to the fund. The NFED also hosted
a continuing education course in conjunction with the race weekend, where more than 100 local dentists were educated about the
topic.
Joey said, “What I thought was going to be an easy project turned into something bigger than I would have ever imagined. My
specific part in the project was to get people to help sponsor the race and organize the race itself. My friend, Kevin Bruce, headed
the raffle and silent auction part of the plan. I sent out more than 200 e-mails and posted fliers and posters around my community.
By race day, over fifty people and companies donated money as sponsors for my race. I raised over $12,000 in sponsorships alone.
For the race day, I teamed up with Premier Sports and FrontRunner to help me organize the event and put on the best race possible.
Even though it was raining, over 375 people showed up to run. In the end, we raised a total of over $19,000 for ectodermal dysplasia
patients.”
OSU plans to make this an annual event where dentists, dental students, the business community and even high school kids can all
raise awareness and resources for this worthwhile cause.
Workplace Fundraising Campaigns Make Giving to the NFED Easy
This fall, there are several opportunities at your workplace for you to help the NFED if you live in the U.S. Last year, donors gifted more
than $23,000 through these campaigns.
USA - Federal Employees #10604
If you are a federal employee, please consider supporting the NFED during this fall’s Combined Federal
Campaign (CFC). The CFC, which runs September 1st through December 15th, promotes and supports
philanthropy through a program that is employee-focused, cost-efficient, and effective in providing
all federal employees the opportunity to help the NFED. The NFED’s (D/B/A Skin and Dental Dysfunction Foundation) designated
number is #10604 on your donor form for 2010.
USA - State Employees
If you are a state government employee, please select the NFED in your state’s employee giving program that allows donations
through payroll deductions or as one-time gifts. Each state has its own eligibility requirements and the NFED currently qualifies and
participates in the following state campaigns:
Arizona
California
Connecticut
Florida
Michigan
Missouri
New Jersey
New York
Georgia
Illinois
Maryland
Massachusetts
North Carolina
Ohio
Pennsylvania
Rhode Island
Texas
Utah
Washington
Wisconsin
United Way
If your workplace participates in the United Way campaign, simply write in “The National Foundation for Ectodermal
Dysplasias” on your donor designation form. Then, let Jackie ([email protected]) at the NFED know you have selected us
and she’ll track the dollars to make sure the Foundation receives them from the United Way. Sending us a copy of the
designation form is the most effective way for Jackie to track this.
Please forward this information to friends and family working for the federal and state government.
Keene Crawfish Boil and BBQ
Greg and Jaimee Keene have hosted a Crawfish Boil and BBQ many times at their home in Boulder, Colorado, but this year they
decided to add a twist. On April 26, when they invited their friends to join them for their annual party, they decided to make it a
fundraiser for the NFED and asked them to make a donation in honor of their family. We were all thrilled by the response that they
received. They raised more than $7,000 Thank you to all who participated!
Summer 2010
The Educator
7
NFED Awareness Items
Silicone Awareness
Wristbands $2
Sun Visor
$12
Baseball Cap
$14
Child and Adult Sizes Available
Travel Mug $6
Can Huggie $3
Lionel Learns What Matters Most
$15
Cinch Sacks $7
Men’s TShirts $18
Mouse Pads $7
Women’s Fitted
T-Shirts $21
Men’s Polo Style
Shirts $26
www.nfed.org
Set of 12 Full Color NFED
Note Cards $12
Youth, Women’s and Men’s Hoodies
$28, $34 and $37
Order Form
Please send _____ Silicone Awareness Wristbands @ $2 each
_____ Child Size
_____ Adult Size
Please send _____ Can Huggies @ $3 each
Tax, shipping, and handling charges are
included in the price of the item.
Please send _____ Travel Mug @ $6 each
Please send _____ Cinch Sacks @ $7 each
Please add $5 for any order outside the
United States.
Please send _____ Mouse Pads @ $7 each
Please send _____ Set(s) of NFED Note cards (12 cards) @ $12 per set
Please send _____ Sun Visors @ $12 each
Please send _____ Baseball caps @ $14 each
Please send _____ Lionel Learns What Matters Most @ $15 each
Please send _____ Women’s Fitted T-Shirts @ $21 each
___ Small ___Medium ___Large ___ X- Large ___ 2X-Large
Please send _____ Men’s T-Shirts @ $18 each ___Small ___Medium ___Large ___ X- Large ___ 2X-Large
Please send _____ Men’s Polo Style Shirts @ $26 each ___ Small___Medium ___Large ___ X- Large ___ 3X- Large
Please send _____ Youth Hoodies @ $28 each
___Small ___Medium ___Large
Please send _____ Women’s Hoodies @ $34 each ___Small ___Medium ___Large ___ X- Large ___ 2X-Large
Please send _____ Men’s Hoodie @ $37 each
Total Amount Enclosed ___Small ___Medium ___Large ___ X- Large ___ 2X-Large
____________________
_____ Enclosed is a check or money order
_____ Please charge to my credit card
____Master Card ____Visa _____Discover _____American Express
Card Number _ ________________________________________________ Expiration date_________________________________________ Name on Card _ ______________________________________________________________________________________________________
Signature ____________________________________________________________________________________________________________ Mail to:
Name _ ______________________________________________________________________________________________________________
Address______________________________________________________________________________________________________________ City _______________________________________ State ________________________________________ Zip _______________________
Phone _______________________________________________________________________________________________________________ 8
The Educator
Please send
payment and
completed form
to: NFED
P. O. Box 114
Mascoutah, IL
62258-0114
Fax
618-566-4718
Online at
www.nfed.org
Summer 2010
Family To Family Network
Welcome, Susan Hamm, as our new Family Liaison in Texas!
My name is Susan Hamm. My husband, Paul, our 10-year-old son, Zachary and I live
in Spring, Texas, a suburb of Houston. Zachary, is affected by ectrodactyly ectodermal
dysplasias with clefting or EEC. The NFED has been an important part of our lives since
2006.
I have a degree in marketing education and taught in the Florida school system for 10
years. I am now the President of Oz Gas Corporation. I enjoy volunteering at my son’s
school, Thiess Elementary, and am currently serving as the secretary for the PTO. I have
also been a room mother each year since 2006.
Zachary, myself and my husband host the Annual Zach Hamm’s Don’t Sweat it Golf
Classic to benefit the NFED. My husband, Paul serves on the NFED Board of Directors.
I am honored to serve as a Family to Family liaison for the NFED.
Contact Us…
Is there a liaison in or near your state? Contact them to chat.
Dee Dee Olsen - New York
516-627-2781
[email protected]
Julie Claeys - Michigan
616-837-1177
[email protected]
Find On Facebook as Julie McGuire Claeys
Susan Hamm - Texas
281-655-4799
[email protected]
Find On Facebook as Susan (Green) Hamm
DeAnn Huxman - Kansas
620-345-2494
[email protected]
Find On Facebook as DeAnn Huxman
Melva Jeter - Colorado
303-404-0552
[email protected]
Janet Johnson - Utah
801-266-7668
[email protected]
Jack Kriz - Oregon
503-538-8533
[email protected]
Find On Facebook as Jack Kriz
Summer 2010
Beth Pond - Massachusetts
978-928-3388
[email protected]
Jill Radley - Arizona
928-428-3861
[email protected]
Find On Facebook as Jill Radley
Lauren Tomberlin – Florida
850-339-4935
[email protected]
Find On Facebook as Lauren Plack Tomberlin
Russ Wilson - Mississippi
901-405-1576
[email protected]
Are you interested in hosting a picnic
or other type of gathering for NFED
families in your area? Contact Kelley
Atchison at the Foundation, (618566-2020, [email protected]) for more
information.
The Educator
Coming Soon…
A liaison in California!
WANTED
Used Cooling
Vests
If you have a used
cooling vest in good
condition that is no
longer needed or is
too small, please mail
it to the NFED. We
will make sure that
another family will
benefit from it.
Pen Pal Wanted
My name is Victoria Winters. I have
hypohydrotic ectodermal dysplasia
(HED). I'm a 15-year-old girl and I would
like a pen-pal around my age going
through the same problems I have. I can
be reached at [email protected].
Find us on
9
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 ectodermal dysplasias 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 dysplasias. What better way to remember a loved one that was an important part of
our ectodermal dysplasias 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 spring of 2010.
Honoraria
Ashley Adams
Sharon Adams
Amelia Springer Aleksoff
Margaret Perkins
Dylan Allen
Mary Conlon
Dee Dee Ameling
Delta Theta Tau
Sorority, Inc. - Alpha Rho Chapter
Max Anderson
Carl D’Angio
Christopher Barbey
A. Dennis Babinecz
Geoffrey and Marci Barbey
Diane Brawarsky
Carbone Smolan Associates
Chris Cooney
Rachel Crawford
David Barnett Design, Inc,
DeMott Chiropractic Office, P.C.
Shelley Friedman
John Gonder
Catherine Goodman
Jerry Hasson
David Hutson
Don Jaclin
Erika Kautz
Edward Mahoney
John Marino
Joyce Papertsian
Thomas Plimpton
Kathryn Rock
Arthur Scheublin
M. Roy Schwarz
Sam Beall
David Beall
Callie Booth
Frederic Harris
Susan Boughner
Charlotte Beck
Mitch Butzner
Donald Butzner
Ben Chenoweth
Beverly Elementary PTO
Jean Claggett
Delta Theta Tau Sorority, Inc. - Xi Chapter
Austin Davis’ 8th Birthday
Kevin Davis
Delta Xi Chapter, Delta Theta Tau Sorority, Inc.
Pat Mote
Zemery Dennis
Charles Fleming
Brandon Doyle
Rosemarie Brenner
Michael Farrar
Shannon Birnbaum
Mary Fitzgerald
Leigh-Ellen Fitzgerald
Josh and Charlie Fulbright
Loraine Fahling
Kiefer Garrett
Richard Garrett
David Geismar
Jake Cohen
Michelle Duran
Zoe Edelblum
Tara Elbaum
Denise Gelb
Michael Herman
Jaimee Loewy
Jennifer Mallah
Candace Moskowitz
Ali Paltrowitz
Lauren Rotko
Jaimee Stulberg
Ruth and David Geismar
Liz Greilsheimer
Ryan Geismar
Mark and Deborah Russo
Brooks & Ryan Ginnan
Ricky Hackenberg
Frank Rooney
Michael Griffis
Kirk Griffis
Sam Gruenhaupt
Scott Anderson
Darin Gruenhaupt
Daniel Teff
Kayla Hafliger
Robert Beyer
Henry & Ava Ciati’s
Floyd Bingel
Birthday
Ruth and Keith Geismar Sara Brawner
Richard Brown
Linda Bunting
Carver Claeys
Julie and Craig Claeys Cynthia Carson
Corey Denninger
10
Frederick Dobbins
Marjorie Donato
Allan Dorman
Ronald Ekovich
Cassidy Facemire
Thomas Flanagan
Sharron Fowler
Susan Fowler
Christopher Ganaway
John Gartland
Raymond Haas
Karen Hawkins-Silvra
Albin Holm
Valerie Holt
George Hubrich
Edward Jata
William Largent
Laura Lopez
Todd Ludeman
Nicholas Makris
Arnold Mapes
Richard McClure
Albert Mea
Beverly Murphy
Jeff Norfleet
Michael O’Reilly
Dan Partain
G. Patch
Michael Petralia
Anthony Reina
River Ridge High School
Sheila Roberts
Thomas Schmidt
Thomas Schultz
Joseph Sentelik
Mark Serio
James Silvera
Stephanie Summers
Stanley Tubman
James Vernola
Andrew Vratsolis
J & S Berson Blessing Fund
Richard Mendenhall
Janice Sears
Grant Keene
Marc Alber
Raymond Allen
Richard Augspurger
Shawn Barry
Paul Beck
Phil Bostley
Mary Clark
Gary Collins
Aaron Cook
Cook & Associates, P.C.
J. Michael Coyner
Cory Davidson
David Evans
Veronica Gauna
H and L Trucking, LLC
Kjell Halvorsen
Scott Harris
Jonathan Harrison
Mark Holman
Edward Huth
Melva Jeter
Donald Keene
Gregory Keene
Judith Keene
Martin Klein
Jenny Madrid
Jessica McClain
Thomas Melcher
Thomas Menshenfriend
David Mercier
Krista Milholm
David Morrissey
Kristine O’Keefe
Christopher Parkes
Dana Patton
Michael Randolph
Brad Richardson
Zach Hamm
Jason Scarpella
Keith Grutzmacher
Jeffrey Schmid
Perkins Drilling Tools, Rhonda Smith
Inc.
Mark Stoldt
Toshiba America Ethan Swift
Business Solutions
Delores Thompson
Thorncreek Cosmetic Elijah Haupt
Dentistry
Eric Haupt
Jenny Untiedt
Alejandro Velasquez
Vivian Hernandez
Adrian Vieth
John Hernandez
Gordon West
Jeffrey Wilce
Madison Hoffman
Mark Wood
Linda Zenkovich
Allyson Kelso
Grant and Tyler Huxman
Nicole Buckley
Paul Haury
J. Jacobsen
Mark and Kristin Kelso
Jarrett James
Patricia Kunzier
Kim James
Cary Lever
Lance Tomlin
Lisa Jebali and Renee
Jebali
Christina Kluzek
Elaine Jebali
Lori Haines
Alex Johnson
John Frederick
Kayla Jordan Knight
Philip Knight
The Educator
Mason Langefeld
Anita Fitzpatrick
Alvina Krier
Omega Nu Tau Sorority - Nu Chapter
Christopher Langley
Michael Langley
Elias Frederic Lev
Brian Krachman
Landon Livingston
Theadore Schmidlapp
Nicolas Longo
Pamela Lewis
Harold Adas
Greg Beasley
Darcy Groenink
Robert Lewis
PBM, Inc.
Richard Van Manen
Angelina Maestranzi
Peter Defrancisco
Vince Maestranzi
Kayla Mahally
Jospeh Bodzio
Julia Marigliano
Michael Marigliano
The Birth of Josephine
Marzullo
Brian Krachman
Constantinos Pandehis
Apostolos Adamopoulos
Maria Angelides
Natia Charalambidou
Emilie Frachon
Tara Lindstedt
Titina Loizides
Sean Miller
Costas Pandehis
Agnes Pandehis
George Pandehis
Constantinos Schizas
Roy Pechtel
Tatts by Zapp
Michael Perossier
Lisa Perossier
Tyler Raisbeck
Ann Gurtner
Mary Kaye and Charley
Richter
Thurman Carver
Haille Shearer
June Pieklo
Peter Shukat’s birthday
Susan and Steve Boughner
Alice and Bruce Geismar
Brett McLaughlin
Sharon Bovee
Mariella Sierra
Richard Alexander
Ricardo Chapa
James Nero
Don Miller
Ethel Tippie
Mariella Sierra and family
Jack and Paula Kriz
Kevin Mulryan
Patricia Manetti
Courtney and Chris
Skillman
Douglas Skillman
Jordan Napier’s graduation
Snyder Family
from high school
Mom’s Club of Kimberly Napier
Malvern
Nolan Noer
Caleb Stark
Keith Hinkle
Laura Locke
Dennis Petronack
Robert Taylor
Steven Strunk
Heather Daniel
Matthew Oberst
Jean Spearman
Lauren Vanhorenbeeck
Pamela Traeger
Nickolas Orgill
Barry Orgill
Weston Walker
Roger Schneider
Ricardo Emilio Palacios
Leyany Alvarez
Jason Waszkiewicz
Rosemary Tyler Paisley
Waszkiewicz
C. Edwin Alter
Grant Berentsen
Wayne Christoffersen Haley Wisner
Mark Wisner
N. Maryann Varciag
Summer 2010
Memorials
Larry Glass
Philip Koffman
Gilbert A. Bayer
Jerry Bayer
Marian Head
Marquita Davis
Len Blanchard
Colleen Gottschalk
Darian Griffin
Derrick Holmes
Susan Rankin
Cathleen Hutchison
Joseph Hutchison
Louise Bruni
Lucille Migliaccio
Ann Carlton
Harold Adas
Greg Beasley
Nancy Craig
Jack Davis
Darcy Groenink
Pamela Lewis
Robert Lewis
Kathryn Lynch
Charles Olszewski
Jeff O’Malley
PBM, Inc.
Richard Van Manen
Dean Wiley
Louie Cefalu
Sal Cefalu
Mr. and Mrs. Paul Comer
David and Suzanne Westhues
Joyce Dintlemann
Mary Kaye and Norman Richter
Elizabeth DiPietro
Salvatore Avellino
Thomas Frascella
Thomas Kelly
John Rafferty
Frank Schaaf
Kathleen Shamy
Bob Eisenberg
Ruth Boorstein
Richard Eubanks
Brian Krachman
Fred Gilliland
Doris Daugherty
Christopher Johnson
Richard Alden
Christine Dauel
Jerry Horn
Keith L. Johnson
Lois Johnson
Elsie Migliaccio
Lucille Migliaccio
Don H. Miller
Jim Williams
Joseph Montalbano
Alfred Cossavella
Walter Morio
Kathleen Morio
Gloria Oldsman
Harvey Gold
Kathy Kemper Reese
Mary Kaye and Norman Richter
Anthony Stella
Thomas Kelly
Richard Vickers
Sal and Harriet Cefalu
Dorothy White
John Hart
Elizabeth Hazzard
Frank Hazzard
Charles Peterson
Mary Kaye and Norman Richter
Henry J. Wittlich for
Father’s Day
June Wittlich
Lillian Yolles
Stanley and Gloria Zwirn
From the Mailbox
NFED,
We just got the bill and Explanation of Benefits from our insurance
for Caleb's latest surgery...$54K! Insurance paid $12K and we are on
the hook for a $75 dollar co pay and a $50 co pay. Thank goodness for
insurance.
Jill Radley, Arizona
Hi,
I’m Hadia Naseem
from Sargodha
(Pakistan). I’m 13
years old. I read
in 8th standard in
Mission Grammar
School. I always
stand first in my
class. My teachers
all love me. I want to
become a doctor. I like
to play video games
and listen to songs.
I’m affectd by x-linked
hypohidrotic ectodermal dysplasia. I have pale
and dry skin, sparse hair, less teeth, and missing
sweat glands. My elder sister and brother are
also affected by XLHED. But I don’t care. I have
supportive family and friends. I love them all. I’m thankful to NFED for giving us
precious information about ectodermal dysplasia and hopeful that NFED will find
cure for us.
Hadia Naseem
New Educational Resources on Law Against Genetic Discrimination
Now Available
With genetic testing becoming increasingly pervasive in medical
care and our daily lives, three of the most prominent organizations
in genetics—the Genetics and Public Policy Center at Johns
Hopkins University, the National Coalition for Health Professional
Education in Genetics, and Genetic Alliance—have teamed up
to produce educational materials about the Genetic Information
Nondiscrimination Act (GINA), a landmark federal law that protects
individuals from the misuse of genetic information in health
insurance and employment.
Enacted in 2008 after 13 years of debate in Congress, GINA limits
health insurers from using a person’s genetic information to set
eligibility requirements, or establish premium or contribution
amounts. The law also prohibits employers from using genetic
information in decisions about hiring, firing, job assignments or
promotions.
The user-friendly materials help health-care providers and
members of the public understand their rights and responsibilities
under the law and provide essential information about its details.
The documents are also clear about what GINA doesn’t cover.
Summer 2010
The public-oriented materials—including an interactive web
site, “GINA & You” information sheet, and slide set for advocacy
organizations—are available, at http://www.GINAHelp.org, in the
Genetic Alliance Resource Repository, and on Genetic Alliance’s
web site, http://www.geneticalliance.org. The web site also
includes a history of GINA’s long struggle and passage.
The materials for health-care providers include these items:
background documents, a discussion guide suggesting how and
when to talk about GINA with patients, a teaching slide set, and,
case studies that describe how the law works in a variety of realworld, clinical settings.
These materials are available on the web site for the National
Coalition for Health Professional Education in Genetics
(NCHPEG), at http://www.nchpeg.org.
The Genetics and Public Policy Center (GPPC), part of the
Johns Hopkins Berman Institute of Bioethics, will have all of
the materials on its web site, at http://www.dnapolicy.org. The
GPPC’s site also includes FAQs and other fact sheets about GINA
aimed at a general audience.
The Educator
11
Who’s New In Your Neck of the Woods?
The Achtermann family from Ohio
The Berger family from Indiana
The Bergeron family from Massachusetts
The Bloom family from Virginia
The Brown family from Missouri
The Burrows family from California
The Campbell family from South Carolina
The Canete family from Florida
The Carroll family from Georgia
The Conner family from Illinois
The Copeland family from Utah
The Corbett family from North Carolina
The Correa family from Brazil
The Crane family from Ohio
The Crouch family from Illinois
The Davis family from California
The Dixon family from Georgia
The Dolin family from Tennessee
The Eiler family from Indiana
The Estkowska family from Poland
The Falk family from British Columbia,
Canada
The Fiandra family from New Jersey
The Gaillard family from New Jersey
The Garza family from Texas
The Guerra family from Philippines
The Hall family from NSW, Australia
The Heigle family from Arkansas
The Heldman family from Indiana
The Hernandz family from Texas
The Hodnett family from Texas
The Hole family from Canada
The Horns family from Georgia
The Impagliazzo family from California
The Israelson family from British
Columbia, Canada
The Johnson family from New Jersey
The Kinnunen family from South Carolina
The Laidlaw family from Alberta, Canada
The Leal family from DF, Mexico
The Lowe family from Virginia
The Marczyk family from Pennsylvania
The Martin family from United Kingdom
The Martinez family from Nevada
The McDaniel family from Texas
The McElhaney family from California
The Mercer family from British Columbia,
Canada
The Miller family from Montana
The Murray family from Alaska
The Nicholson family from Oklahoma
The Norton family from South Africa
The Parker family from Michigan
The Paschoal family from Brazil
The Pentland family from New Brunswick,
Canada
The Pratt-Fortin family from Maryland
The Pressley family from Kentucky
The Proctor family from Oklahoma
The Rape family from Georgia
The Rick family from Tennessee
The Robles family from Texas
The Seppel family from Wisconsin
The Snyder family from Ohio
The Taylor family from Tennessee
The Thomas family from Illinois
The Thompson family from Georgia
The Truett family from Georgia
The Tsangaris family from NSW, Australia
The Vaughan family from Virginia
The Waibel family from Minnesota
The Williams family from Utah
The Williams family from Florida
The Willis family from Texas
The York family from Missouri
Organizations Affiliated with the
National Foundation for Ectodermal Dysplasias
The NFED takes an active role in collaborating with the following organizations in order to better serve individuals affected by ectodermal
dysplasias.
American Academy of Dermatology (AAD) – the largest,
most influential and most representative of all dermatologic
associations. With a membership of more than 16,000, it
represents virtually all practicing dermatologists in the United
States. www.aad.org
American Academy of Pediatrics (AAP) – the primary
association of pediatricians who dedicated their efforts and
resources to the health, safety and well-being of infants, children,
adolescents and young adults. The AAP has approximately
60,000 members in the United States, Canada, Mexico and
many other countries. Members include pediatricians, pediatric
medical subspecialists and pediatric surgical specialists. More
than 34,000 members are board-certified and called Fellows of
the AAP. The mission of the AAP is to attain optimal physical,
mental, and social health and well-being for all infants, children,
adolescents, and young adults. www.aap.org
American Academy of Maxillofacial Prosthodontists - an
association of prosthodontists who are engaged in the art
and science of maxillofacial prosthetics. Their mission is to
accumulate and disseminate knowledge and experience; and,
to promote and maintain research programs involving methods,
12
techniques and devices used in maxillofacial prosthetics. The
Academy is devoted to the study and practice of methods used
to habilitate esthetics and function of patients with acquired,
congenital and developmental defects of the head and neck;
and of methods used to maintain the oral health of patients
exposed to cancer-cidal doses of radiation or cytotoxic drugs.
Coalition of Skin Diseases (CSD) – a coalition of patient
advocacy groups addressing the needs and concerns of
millions of people whose lives are affected by skin disease.
The CSD works closely with the National Institute of Arthritis
and Musculoskeletal and Skin Diseases (NIAMS) to coordinate
research efforts for all skin diseases. Members of the Coalition
meet annually with members of Congress and testify when
selected before the appropriations committees to educate
Congress and the public on the seriousness of skin diseases
while stressing the need for increased medical funding. www.
coalitionofskindiseases.org
Friends of the National Institute for Dental and Craniofacial
Research – a non-profit entity established to promote and
enhance research at the NIDCR. The organization has helped
to organize congressional visits by non-profit groups having a
The Educator
Summer 2010
particular interest in craniofacial research joined by scientists
and educators. The group also created the Oral Health Caucus
comprised of members of Congress to promote and support oral
health efforts. The group is the only support organization that
includes advocacy groups, members of professional oral health
agencies, educators and researchers. www.fnidcr.org
Genetic Alliance – Genetic Alliance is the world’s leading
nonprofit health advocacy organization committed to
transforming health through genetics and promoting an
environment of openness centered on the health of individuals,
families, and communities. Genetic Alliance’s network includes
more than 1,000 disease-specific advocacy organizations, as well
as thousands of universities, private companies, government
agencies, and public policy organizations. The network is a
dynamic and growing open space for shared resources, creative
tools, and innovative programs. www.geneticalliance.org
National Children’s Oral Health Foundation: America’s
Toothfairy® (NCOHF) - a national nonprofit organization
dedicated to eliminating America’s #1 chronic childhood
illness: pediatric dental disease, and ensuring all children can
receive the comprehensive oral healthcare they deserve. By
supporting a growing Affiliate network of community-based
nonprofit health facilities with funding, product donations, and
educational resources, NCOHF has already touched the lives of
more than 1 million underserved children. NCOHF affiliates and
volunteer professionals are committed to providing the very
best education, prevention and treatment programs for at-risk
children nationwide…because every child deserves a healthy
smile®. www.AmericasToothfairy.org
National Health Council (NHC) - The National Health Council
is the only organization of its kind that brings together all
segments of the health care community to provide a united
voice for the more than 133 million people with chronic
diseases and disabilities and their family caregivers. Made up
of more than 100 national health-related organizations, its core
membership includes 50 of the nation’s leading patient advocacy
groups. Other members include professional and membership
associations, nonprofit organizations with an interest in health,
and major pharmaceutical, medical device, and biotechnology
companies. The National Health Council brings together diverse
stakeholders within the health community to work for health
care that meets the personal needs and goals of people with
chronic diseases and disabilities. www.nationalhealthcouncil.org
National Institute of Arthritis and Musculoskeletal and
Skin Diseases (NIAMS) – a part of the NIH, NIAMS supports
research into the causes, treatment, and prevention of arthritis
and musculoskeletal and skin diseases; the training of basic
and clinical scientists to carry out this research; and the
dissemination of information on progress made in research.
www.niams.nih.gov
Summer 2010
National Institutes of Health (NIH) – a part of the U.S.
Department of Health and Human Services, the NIH is the
primary federal agency for conducting and supporting medical
research. Helping to lead the way toward important medical
discoveries that improve people’s health and save lives, NIH
scientists investigate ways to prevent diseases as well as
determining the causes, treatment, and even cures for common
and rare diseases. Composed of 27 Institutes and Centers, the
NIH provides leadership and financial support to researchers
in every state and throughout the world, with headquarters in
Bethesda, Maryland, the NIH has more than 18,000 employees
on its main campus and at satellite sites across the country. With
the support of the American people, the NIH annually invests
over $28 billion annually in medical research. More than 83% of
the NIH’s funding is awarded through almost 50,000 competitive
grants to more than 325,000 researchers at over 3,000
universities, medical schools, and other research institutions.
About 10% of the NIH budget supports projects conducted by
nearly 6,000 scientists in its own laboratories, most of which are
located at its headquarters. www.nih.gov
National Organization for Rare Disorders and the NIH Office
of Rare Diseases (NORD) - NORD has long been the premiere
lobbying group for individuals affected by rare conditions.
The organization remains a clearinghouse for information, the
stimulator of political action and watchdog on all legislation
which may impact individuals from member agencies. NORD
was pivotal to the creation of the NIH Office of Rare Diseases
(ORD) which now oversees all research on rare conditions.
The ORD created a program aimed at determining diagnoses
for individuals affected by complicated conditions. www.
rarediseases.org
NIDCR: National Institute for Dental and Craniofacial
Research – The NIDCR is the premiere funder for research
involving the oral cavity and craniofacial conditions. The
Institute supports research underway on the NIH campus as well
as projects in the U.S. and around the world. www.fnidcr.org
Congratulations to NFED Executive
Director, Mary Kaye Richter on
the birth of her new grandson, Miles
Richter Grimes. Miles was born on
April 7, 2010.
Congratulations to NFED Director
of Education, Malinda Heuring
and her husband Mark, on the birth
of their daughter, Miller Elise
Heuring. Miller was born on April
26, 2010.
The Educator
13
Volunteer Feature - Cathy Klingelhoefer
When Cathy Klingelhoefer joined the Board of Directors in 1987, she was in her early 30s, had three
young daughters and was passionate about what the NFED was doing to help families affected by
ectodermal dysplasias. Her commitment led to 23 years of services and leadership on the Board. It’s
been our privilege to have Cathy as a volunteer and to have her family grow up with the Foundation.
A Mascoutah resident, Cathy belonged to the church where the NFED had their first office and where
NFED’s Mary Kaye Richter and Beverly Meier also attended. It’s there that she met little Charley Richter.
Given her longevity, Cathy has served in nearly every volunteer position. She has been Vice President,
Secretary, Treasurer, and Personnel Liaison. She has participated on the Apple Classic Golf Tournament
Committee, Budget and Finance Committee, Development Committee, Education Scholarship
Committee, Gateway Open Golf Tournament Committee, Nominating Committee, Investment
Committee and the Ways and Means Committee.
One of Cathy’s biggest assets is being a visionary for the Foundation. For instance, in 1995, it was
Cathy’s idea to start a second golf tournament to raise needed revenue. Under her leadership,
the NFED started the Gateway Open Golf Tournament which lasted through 2002, raised about
$200,000 total and increased awareness of the NFED in the St. Louis area.
Mary Kaye says, “Cathy K. possesses a rare dedication to a cause that few others can emulate. For
more than 20 years, she provided expertise, time, energy and talent to an organization in which she
was not personally vested. Her commitment to the mission of the NFED resulted in programs like
our academic scholarship competition, our treatment assistance program and was she was an early
champion for our research program when others may not have shared her enthusiasm…with the
result that we’re now talking about the possibility of the reversal of symptoms. She is a true leader
in the finest sense of the word.”
Cathy has spent the majority of her career in banking and is currently the Senior Vice President and
Consumer Sales Manager with Regions Bank. She and her husband, Tom, have three daughters,
Tara, Melanie and Haley, who are all now adults. Through the years, the girls volunteered at NFED
golf tournaments and other activities.
While Cathy has stepped down from the Board, she will always be a part of the Foundation. We
thank Cathy for her leadership, for her generous heart and for her dedication to the NFED family!
International News
New Ectodermal Dysplasias Group Forms in Ireland
The Irish group will serve as a branch of the Ectodermal Dysplasia Society in the United Kingdom. They will provide emotional
support to families affected by ectodermal dysplasias. If anyone would like to contact the Irish branch please e-mail- Elaine at
[email protected] or [email protected].
Ectodermal Dysplasia Support Groups
Around the World
Austria / Germany
www.ektodermale-dysplasie.de
Vereinsadresse:
Australia
Selbsthilfegruppe Ektodermale Dysplasie e.V.
Email [email protected]
Andrea Burk
Web Site www.ozed.org.au
Landhausweg 3
ozED – Australian Ectodermal Dysplasia Support Group is a
volunteer run organization that provides support, information
and education to people and families affected by ectodermal
dysplasia. We provide lobbying, advocacy, family days, a
national conference and other support services. We have state
representatives in most states and also welcome members from
outside Australia (particularly in our region where groups do not
exist).
14
D- 72631 Aichtal
The patient support group was founded 1991. There are
approximately 160 families that are members. The group
covers the German speaking countries of Germany, Austria and
Switzerland. The objectives are exchanges of experiences and
information for families and affected people. We offer assistance
and support in order to make possible a normal life.
Information to the public about the rare disorder as well as
The Educator
Summer 2010
collaboration with our medical advisory board and the resulting
for research out of it are main goals of our group. We are
convinced that it is very important to maintain contact and
exchange information and experiences with the international
groups – this makes us feel that we all belong to one big
ectodermal dysplasia-family!
Adresse für Auslandskontakte:
Asociación Mexicana de Displasia Ectodérmica Mariana, A.C.
AMDEM (Mexican Association of Ectodermal Dysplasia Mariana,
A.C) It’s a civil association that arise in union of 13 international
groups of help.
Norwegian
Norsk ED forening
Ulrike Holzer
Phone 0047 976 76 460
Pantlitschkogasse 5
Email [email protected]
A- 1230 Wien
Netherlands, Belgium, Luxemborg
Ectodermale Dysplasie
Telephone + 31 (0) 182-583545
Email [email protected]
Web site http://ednl.webklik.nl
Hyves http://ectodermaledysplasie.hyves.nl
Web site www.norskedforening.no
We are a new organization in Norway with about 35 members.
Our goal is to make a good and well functional web-page
with information on diagnosis, help with the government/
social health care, and to bring people affected by ectodermal
dypslaisas and their families together.
Spain
Asociación de afectados por displasia ectodérmica
(A.A.D.E.)
Ectodermale Dysplasie is an organization for the Netherlands and
Belgium. Our target is to offer (practical) help to people and their
families with (all forms of ) ectodermal dysplasia.
Phone 626267988/968350026
Email- [email protected]
France
Web site - www.displasiaectodermica.org
Association Française des Dysplasies Ectodermiques
Web site www.afde.net
AFDE is connected with health specialists and has created a
network for every ectodermal dysplasia need. We pay treatments
and organize and pay summer holidays camp to ectodermal
dypslasia kids. We are involved with research and we learn
everyday from our hundreds of families.
“It is an Association without spirit of profit, which ends
(purposes) are to promote and to realize all kinds of activities
that help to improve the quality of life of the persons affected
for ectodermal dysplasia, and to work for families and social
integration”
Turkey
Ektodermal Displazi Grubu – Türkiye
Italy
Phone +90 412 248 81 01 - 04
Associazione A.N.D.E.
Email - [email protected]
Via Cascina Fidelina,19
Web site - http://www.ektodermaldisplazi.com/
20061 Carugate (MI)
Tel.Fax 02 92150556
P.I.: 94029540153
The ANDE Association was born in November 1999. Its aims
are social solidarity, assistance and protection of civil rights for
ectodermal dysplasia sick people. These aims are achieved by the
collection of information concerning all the suitable therapies for
this syndrome, the organization and the promotion of meetings,
and by the study of this syndrome.
The Association wants to awaken the public opinion for what
concerns the existence of ectodermal dysplasia and, above all,
wants to promote by the Public Board initiatives for consultation
and assistance towards the sick people and their families.
Mexico
ASOCIACIÓN MEXICANA DE DISPLASIA ECTODÉRMICA
MARIANA, A.C.
Phone 722 2 80 15 57
Web site www.amdem.og.mx
Summer 2010
Our main aims are, Getting cooperation with international
groups for research opportunity and develop of knowledge.
Prepare one book in English and Turkish which will be
about ectodermal dysplasias. Holding annual national and
international conferences in Turkey. Prepare some sheet and
pamphlets which will give information about ectodermal
dypslaisas to the cases and physicians.
United Kingdom
The Ectodermal Dysplasia Society
Phone +44 (0) 1242 261332
Email - [email protected]
Web site - www.ectodermaldysplasia.org
Provides information, advice, support to those affected by
ectodermal dysplasia. Promotes the education of the medical
profession and general public. Supports research. Liaises with
the Charity’s Medical Advisory Board. Supports members
in negotiations for financial aid/other services. Encourages
network for mutual support. Produces regular newsletter.
Maintains Web site.
The Educator
15
NATIONAL FOUNDATION FOR
ECTODERMAL DYSPLASIAS
PO BOX 114 410 E. MAIN ST
MASCOUTAH IL 62258-0114
UNITED STATES OF AMERICA
Calendar of Events
Zach Hamm’s Don’t Sweat It Golf Classic
Hosted by the Hamm Family
August 8, 2010
NONPROFIT
U.S. POSTAGE
PAID
PERMIT NO. 13
MASCOUTAH, IL
Kayla’s 5k
The Hafliger family hosted a 5K Run Event called “Kayla’s 5K”
in New Port Richey, Florida, on June 6 and greeted 68 runners
for their first-year event. They raised close to $1,500. They
had a great time putting things together with family, friends
and the community. They are already hard at work planning
their 2nd annual 5K for 2011. Thank you, Hafliger Family!
Topical Conference Call:
The Big Three: Skin, Hair and Nails
September 7, 2010
Miles & Smiles
Bike Ride and Rally for the NFED
October 2, 2010
Mascoutah, Illinois
10th Annual Halloween Bash
Hosted by the Geismar Family
October 28, 2010
New York City, New York
Topical Conference Call:
“Chat with Mary Kaye Richter”
November 2, 2010
Do You Have A Billion Dollar
Smile?
The Billion Dollar Smile celebrates
individuals affected by an ectodermal
dysplasia who have completed dental
work, received dentures or who are finding
success with their dentures. If you would
like to show off a Billion Dollar Smile, send
a high quality, clear photograph to the
NFED office and share your story.