Rett Link - Rett Syndrome Association of Illinois

Rett Link
A Publication from the Linking the Rett
Rett Syndrome Association of Illinois Community Together
www.rettillinois.org Winter 2007/2008
18 Years of Caring & Sharing
Annual Dinner Dance & Auction
September 29th marked the Rett
Syndrome Association of Illinois
18 Years of Caring and Sharing Annual
Dinner, Dance and Auction. Over 250
family and friends gathered to support
the Annual Fund-raising Event at Drury
Lane Oak Brook, IL. Over $50,000 was
raised; funding that will enable the RSAI
to continue to support quality initiatives
in our Rett Syndrome community.
Our Annual Event was again cochaired
by Marie Kral and Michele Mc-
Govern. Many volunteers generously
offered their time and talent to assist
in coordinating the event: Bob Blaho,
Kay Borchardt, Mike Borchardt, Camille
Buzinski, Leslie Chatwood, Carol
Conboy, Rita Domeier, Lisa Faul,
Sharon Haas, Mandy Hammer, Sara
Hulsebus, Cheryl Jagen, Paul Jochim,
Frem Jodoin, Kira Johns, Gary Kral,
Kevin Kral, Shannon Lahey, Maryann
Lanan, Danny McGovern, John Mc-
Govern, Johnny McGovern, Maureen
McGovern, Megan McGovern, Corki
Meade, Courtney Pryor, Philip Pryor,
Joanne Richards, Susan Schoen, Michelle
Wagner, and a great group of
Student Volunteers - Kate Burnier, Jessica
Everaert, Cody Freischlag, Kyle
Freischlag, Torie Krzwenia, Lauren
Minardi, Kristin Matuga, Kant Pandya,
and Allyson Staats. “WOW” – Way to
go everyone!!!
A special “Thank You” to:
Kyle DeSantis of Drury Lane
by Marie Kral
‘07 DDA Event Co-Chair
for his expertise and generosity, and to
the staff of Drury Lane for their excellent
food preparation and service
Dean & Suzy Anderson of
Midwest Conference Service / Audio,
Visual, and Technical Assistance, Signage
and Tribute Banner
Frem Jodoin of Jimmy’s Place
/ Table Wine
Caffé Baci – Joe DiCarlo &
Lisa Bork / Dessert Table
Karyn & Tom Lisowski / Tribute
Video
Linda Lahey / Rett Syndrome
Angel Bracelets
Dee Fritz / Graphic Design
VISOgraphic/Program Book
(continued on page 5)
FAMILY & FRIENDS SWIM DAY Sunday, February 24, 2008
Elk Grove Village Park District 1000 Wellington Ave. (Biesterfi eld & Wellington)
Swim from 12:45 to 2:45 pm in the Lagoon & Lap Pools
Fun, Food and Entertainment in the Garden Terrace Room from 2:45 to 6:00 pm
RSVP to Kathy Medley 815-478-7021 kathykk1@msn.com

Profi ling Extraordinary Volunteers by Marie Kral
Many of you may be familiar with
Shannon Lahey. Shannon has
been a caregiver to my daughter Kari
Anne since the summer of 2003, the
summer before Shannon’s Junior year
at high school. Shannon is now a Junior
at Illinois State University studying
Special Education. Shannon has been
our Student Volunteer Coordinator for
the RSAI Annual Dinner, Dance, and
Auction since 2004. She also regularly
attends many of our family networking
functions including the Family Swim
Day and Family Picnic. Shannon has
also volunteered at the IRSF Clinics
Research Program – NIH RDCRN Natural
History Study Clinic Events held
2
Parents’
Night Out
Saturday, January 26, 2008
Time 6:30 pm
$15.00 per person*
Vic’s Oakbrook Terrace
1700W400 22nd Street
Oakbrook Terrace, IL
(630) 833-2700
*a portion of the dinner charge
is being subsidized by RSAI
RSVP to Kathy Medley
815-478-7021 or
kathykk1@msn.com
at Rush
University
Medical
Center.
At our
September
29th – 18
Years of
Caring &
Sharing
– Annual
Dinner,
Dance,
and Auction – I proudly presented
Shannon with a plaque acknowledging
her “Caring Commitment to our Rett
Syndrome Community”. We deeply
appreciate Shannon’s contribution of
her time and talent to the RSAI – not
to mention the love and support of Kari
Anne and my family!
And not to wonder where Shannon
developed her caring attitude,
Shannon’s mom, Linda Lahey, contacted
me to ask if we would like her to
make “Rett Syndrome Angel Bracelets”
Rett Syndrome Association of IL
One Tower Lane Suite 1700 Oakbrook Terrace, IL 60181
Phone: 630-645-2280 Fax: 630-573-5205
Calendar of Events
for the September 29th Dinner, Dance,
and Auction. Linda designed, crafted,
and donated 35 bracelets, selling for
$20 each. The “Angel Bracelets” were
such a popular addition to our event,
that we took orders that evening for
25 additional bracelets. Linda’s great
idea and generous donation netted the
RSAI $1,200!
(We may offer the Rett Syndrome
Angel Bracelets again in the future, but
we are going to give Linda a chance to
catch up on the orders!)
2008
January 26 Rett Parents Night Out at Vic’s Oakbrook Terrace
February 24 15 th Annual Family & Friends Swim Day
March 1 Buddha 20th and Last Basketball Blowout
April Run for Rett
May 3 3 rd Annual Six Flags Great America Coasters for a
Cause Day
May 8 Strollathon for Rett Research
May 23-26 IRSF Conference in Chicago
June/July 19 th Annual Family & Friends Picnic
August 24 Hammer Open Golf Outing
October 4 19 th Annual Dinner Dance & Auction
October 12 5 th Annual Family Zoo Day
Watch for a fl yer in the mail with more details for these upcoming
events or check our website at www.rettillinois.com

Meet Our Children
Karisa Austin was born on December
15, 1998 (her due date!) at
7:45 a.m. Karisa weighed 6 lbs. 7 oz.
and was 21 ½ inches long. Karisa was
a very happy, content baby. For the
fi rst six months of her life, everything
seemed to be normal. She seemed to
be doing all the things a six month old
would do including being an incredible
roller. Karisa could cover an
entire room. She would roll from wall
to wall, turning herself when she hit
the next wall. One day Karisa rolled
over to the foyer where her big sister
Kayli was talking to
a friend and bit her
ankle! Kayli and
Karisa have adored
each other since day
one. Karisa lights up
at the sight of her big
sister, and if there is
one person that can
get Karisa to giggle,
it is Kayli.
The path to
Karisa’s diagnosis
was a long one. At 9
months Karisa could
not sit on her own so
her doctor told us she
wanted PT for her if she wasn’t doing
this by 10 months. We worked very
hard, and she could sit on her own by
10 months, but after that she continued
to miss the milestones that she
should have obtained. She started
PT at 12 months and OT and Speech
at 15 months. At 12 months,
we started the path of fi nding
out what was wrong. The
process started with a child
development specialist who
referred us to a neurologist
who referred us to a geneticist.
Karisa had a spinal tap and so
many blood tests, we stopped
counting. She was given the
“developmental delay” label.
It was one day when we were
in a birth-to-3 meeting (the WI state
program for early intervention) that
Karisa’s OT asked if
we wanted to know
what she thought it
was. She felt Karisa
had Rett syndrome.
After doing research
on Rett syndrome
and shedding a
lot of tears, we asked
her geneticist at the
time if this could be.
He said “absolutely
not, this is not a child
with Rett syndrome”.
We asked why, and he
said that she would
not be feeding herself
cheerios and drinking her juice
like she was doing at the time of the
appointment. So we went with his
next test which was a muscle, nerve,
tissue biopsy. Again, came back with
no conclusive answer. We requested
the Rett test, and it came back positive!
This result came
in February of 2002
when Karisa was 3
years, 2 months.
Karisa’s onset
was very early at 6
months. She never
learned to walk, although
we are working
very hard on this,
and she will walk if
you hold her under
the arms and help her
with weight shift. We
by Kathy Austin
Family Daycare, Madison, WI
keep pushing her! Karisa did lose use
of her hands, as they were taken over
by her repetitive hand movement of
her left hand tapping her belly and her
right hand tapping the top of her head.
Karisa has many of the things that
come with the Rett syndrome package;
scoliosis, feeding tube, irregular
breathing and seizures.
Karisa’s seizures started in June
of 2005, and she continues to have
a seizure about every week. This
has been the biggest struggle of the
last two years for Karisa. The last
medication Karisa was on caused her
to have full body jerks so severe that
she could fall out of her chair. Her
eating, walking, sitting and scoliosis
all deteriorated signifi cantly during
this time. We have removed Karisa
completely from this medication and
the jerking has stopped. She continues
to have a seizure about every week
which at some time we may need to
introduce a new medication. Karisa
is regaining some of the things she lost
due to the jerking.
Karisa is in school full time, with
her primary class being the special
education room. Karisa spends time
with the second grade class when appropriate.
Karisa absolutely loves
school and all of her friends and
interaction. Her favorite things are
specially designed physical ed., music
and cooking.
Karisa loves to be outside and
swing on the swing. She also likes to
be read to and watch Wheel of Fortune,
(continued on page 4)
3

Meet Our Children
(continued from page 3)
Barney and some shows on the Disney Channel.
Karisa enjoys our family vacations to northern
Wisconsin every summer with her grandma, grandpa,
aunties, uncles and cousins. She has also spent time at
the ocean in Florida with her other grandma, grandpa,
auntie, uncle and cousins. This summer Karisa was the
honorary junior cheerleader for Kayli’s cheerleading
squad. Kayli’s friends just adore Karisa.
Karisa will be 9 in December and has touched
everyone’s life that she has met and continues to meet.
Her smile and eyes are beautiful. Like other girls with
Rett syndrome, Karisa’s eyes say it all. Karisa’s family
and friends all love her dearly, she is one special
little girl!
4
Rett Syndrome
Handbook, Second Edition
This is the book that every parent,
grandparent, teacher, therapist, doctor,
and caretaker must have! Anyone who is in
the life of a loved one with Rett syndrome
should own a copy of this book (called
by many the “Rett Syndrome Bible”).
Order your copy at
1-800-818-RETT or at the
website: www.rettsyndrome.org
Don’t forget an
Executive Summary
Many parents have heard
about “Letters of Intent”,
“Instruction”, or “Guidance”
Letters for future care providers,
guardians, and trustees.
There are many forms available
on the Internet and many
given out by agencies and
groups. Basically, writing a
“book” about your child, I provide
a form for my clients, my
fellow parents. However, what
many parents neglect to do is
write an “Executive Summary”.
Five years ago my child with
autism moved into a Clearbrook
CILA (Group Home). My family
(my other children, my wife,
and myself) had prepared such
a “book”. In fact, we actually
bound the book. We included
a table of contents and index,
and included tabs for chapters.
When we met with the “management”,
we presented the “book”.
This was a very, very diffi cult
time in our lives, for no parent is
comfortable with the decision to
have their child leave the family
home. I sometimes refer to this
as the “head vs. heart”. Having
served on the Clearbrook Board
since 1989, I knew everyone in
by Brian Rubin
the room, quite well. They felt
comfortable explaining to me
the facts of life that the direct
care staff would never read the
“book”. They made an excellent
suggestion that I have shared,
ever since that meeting, with my
fellow families. They urged us
to create an “Executive Summary”.
Simply stated, “How to
make it through 24 hours with
my child”. That is, a sheet of
paper, front and back, of “bullet”
points. Being an attorney,
I convinced them to accept “legal
size” paper… more room for
more points. Next to many of
the points, we reference on what
page in the “book” the reader
will fi nd more information on
that “bullet” point. It has worked
well. Think of when you might
have a night out, or a weekend
escape. Think of the instructions
that you “write out”. Use that as
a start. Regretfully, there is high
turnover in staff. For us parents,
it is a life long 24/7 responsibility.
Our special needs child is always
in our thoughts, especially
when others are caring for them.
While I pray that my wife or
(continued on page 12)

Strollathon and Holiday Tree by Marcia Admaski
May 17, 2008 will be the 1st Annual
Emma and Friends Strollathon,
also known as the Chicago
Strollathon. All proceeds from the
Strollathon will benefi t Rett syndrome
research. Volunteers are needed to
work on planning committees, serve
as team captains, and assist on the day
of the Strollathon. After the 3-mile
walk through the Midlothian Meadows
located at 159th and Crawford in
Markham, IL, we will have a fun fair
with clowns and a performance by
Those Amazing Little People.
We need a generator and stage
to use for the day of the Strollathon.
We also hope to fi nd a bouncy tent to
use for the day. If you have any leads
on either of those items, please contact
Marcia Adamski madamski99@
yahoo.com or (708) 597-4611.
Jon Fey / Superior Awards
The generosity and participation
of so many of our RSAI families and
friends made this annual event quite
extraordinary! The Donor Lists reprinted
in this newsletter highlight just
how well-supported the RSAI is in our
Illinois community.
Several people/organizations
were recognized during the evening
for their continuing, generous fi nancial
support of RSAI:
Adam “Buddha” Lavey -
Platinum Angel Sponsor. We are very
grateful to Adam for his many years of
incredible generosity in raising funds
for research – over $100,000 to date.
Knights of Columbus, St.
Margaret Mary Council # 11091 of Algonquin,
IL Annual “Hammer Open”
Event – Tom & Nola Schlueter
Knights of Columbus, St. John
Council # 3738 of Westmont, IL Annual
MR/LD Drive – Mike & Kay Borchardt
Our Annual Event is a time to
pay Tribute to our girls and women
and the many families facing the daily
challenges of Rett Syndrome. We are
In an attempt to increase the
amount of the funds we raise for Rett
grateful to each of you for your participation;
we could NOT have done it
without you – your many contributions
of time, talent, and resources culminated
in another successful event.
Save the Date – Mark your Calendars!
The RSAI “19 Years of Caring
& Sharing” Annual Dinner, Dance and
Auction will be held October 4, 2008
at Drury Lane Oak Brook.
The Rett Syndrome Association
of Illinois strives to provide funding
for research, awareness and education,
and family informational support
and networking activities. The Rett
Syndrome Association of Illinois is a
not-for-profi t 501 (c) 3 organization
and your donations are tax deductible
to the extent allowable by law.
Contact Marie Kral, 630-910-
7446 - kraldg@sbcglobal.net; or
Michele McGovern, 708-447-3961
- mmcgovern6@sbcgobal.net if you
would like more information about
participating in the RSAI Annual
Fund-raiser. All are welcome – every
contribution does make a difference!
syndrome research, the Strollathon
planning committee will be hosting
several other fundraisers during the
year, including several Jewel Shop and
Share days (see enclosed coupons).
To help promote Rett Syndrome
Awareness and the Strollathon, we have
purchased a Holiday Tree at Brookfi eld
Zoo. The tree is decorated with homemade
ornaments. The tree will be on
display during the Brookfield Zoo
Holiday Lights event Holiday Magic,
Saturdays and Sundays in December
and Wednesday, December 26 through
Monday, December 31. Celebrate the
holiday season in lights! Nearly one
million twinkling lights will line the
walkways at Brookfi eld Zoo and the
park will come to life with carolers,
celebrity storytellers, live music, magicians,
and much much more.
Dinner Dance & Auction (continued from page 1) Equipment Exchange
1. Pair of elbow splits–small (under
age 5) black fabric. Donated by
the Maiya Novitsky family. Contact
Marie Kral–630-910-7446 or
kraldg@sbcglobal.net—to have
them shipped.
2. Wenzelite Tilt/Recline Chair
with Traveler Base. Lightweight
stroller with front swivel wheels
and oversized rear tires; blue/purple
fabric. Donated by the Megan
Sawyer family. Contact Marie
Kral–630-910-7446 or kraldg@
sbcglobal.net—to arrange for your
own shipping or pickup.
REMINDER: Anyone who would
like to donate an item, please write
a description of the equipment
along with your contact information
and forward it to PJochim@
aol.com. Any costs associated
with shipping and/or receiving the
equipment will be worked out between
the two parties involved. It
is the responsibility of the receiving
party to ensure that the item is
safe and appropriate for their situation.
5

4 th Annual Fall Family Zoo Day
by Kathy Medley
The 4th Annual Fall Family Zoo Day was held October 7, 2007 at
Brookfi eld Zoo. Ten families attended, and we all had a wonderful
time. The weather was bright and sunny and very warm. Our fi rst
stop was everyone’s favorite, the Dolphin Show. Other favorites
included the monkeys, giraffes, exotic fish and the indoor jungle.
After spending several hours viewing the animals, we all enjoyed
a restful backyard barbeque at the McGovern’s house. We feasted on
hamburgers and hot dogs and had plenty of time to visit with each other.
The next Zoo Day is scheduled for Sunday, October 12, 2008. Please
be sure to mark your calendar and plan to join us.
6

RSAI Receives $3,500 Donation
A member of the St. Margaret Mary Knights of Columbus Council #11091–Juergen
Huellen–presented a check for $3,500 to Nola Schlueter and Paul Jochim for the Rett
Syndrome Association of Illinois. A HUGE “Thank You” goes out to all 114 golfers
and 30 sponsors who participated in this year’s “Hammer Open” golf outing, making
it such a great success and in raising funds for Rett syndrome research.
18 Years of Caring & Sharing
Greetings
Save the Date
24th Annual Rett
Syndrome Conference
Fairmont Hotel, Chicago
May 23-26, 2008
Families, Physicians,
Therapists and Educators!
Registration begins
January ‘08
www.rettsyndrome.org.
IRSF
International Rett Syndrome Foundation
On behalf of all the families and friends that make up the International Rett Syndrome Foundation (IRSF)
congratulations and best wishes on another successful RSAI Dinner, Dance, and Auction!
This has been an extraordinary year for the Rett syndrome world.
It began with the exciting and encouraging announcement from the laboratories of Adiran Bird proving that many
of the symptoms of Rett syndrome may be reversible. While there’s still a long road ahead of us before we will be able
to create the necessary conditions to reverse symptoms of Rett syndrome in our loved ones, it certainly gives us the
hope, direction, and the motivation to redouble our efforts.
This summer brought more news: the International Rett Syndrome Association and the Rett Syndrome Research
Foundation announced a historic merger. This strategic consolidation of assets, best practices, experience, and personnel
will accelerate and focus our efforts on the critical fronts of research, family support, advocacy, and awareness.
The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome while enhancing the
overall quality of life for those living with Rett syndrome by providing information, programs, and services.
Already IRSF has announced the record funding of over $2.785 million in research commitments; a new Family
Advisory Board is being formed to help guide the new organization as it develops and grows its already strong family
support programs, conferences, informational services, and more; and we are making important progress with already
established and new relationships in the scientifi c, corporate, and governmental communities. We have a long to-do list,
but we’re already making meaningful progress.
This unifi cation represents an exciting opportunity for the Rett syndrome community to make signifi cant progress
on all fronts, and we are thrilled to continue our special relationship with RSAI. “Eighteen years of Caring & Sharing”
… Wow! THANK YOU! Your efforts have been making such a signifi cant difference for so long now. We are all so
grateful for all your work, leadership, and support.
Best wishes,
IRSF Board and Staff7
7

8
18 th A
Dinner Dance & Au

nnual
ction Celebration
9

Platinum Angel Sponsor ($15,000 Plus)
Adam “Buddha” Lavey – Fundraiser
Silver Angel Sponsor ($2,500 Plus)
Knights of Columbus – St. John Council # 3738 of Westmont, IL
Knights of Columbus – St. Margaret Mary Council # 11091 of Algonquin, IL
Theresa M. Boyle
Custom Cars Unlimited
Drs. Jeffrey D. & Rebecca G. Eaton, DDS PC
Ferrari Club of America – Central States Region
Food 4 Less
GATX Rail – Corporate Matching Gift
Jean Gershuny
Jacob Press’ Sons, Inc.
JC Penney Company Fund, Inc.
Nadine Bahaveolos
Todd & Jeale Baryl
Brian Rubin & Associates
Pete & Mary Kay Brown
Continental Acura & Audi of Naperville
Docu-Shred
Downers Grove Junior Woman’s Club
John & Nancy Gilleland
Michael & Patricia Gillian
J P Morgan Chase Bank NA
Knights of Columbus – Mt. Prospect Council # 6481
Gary & Marie Kral
10
Thank You to Our DDA Cash Donors
Bronze Angel Sponsor ($1,000 Plus)
Bob Brigham, Jr.
Case Lots, Inc. – Gary & Rose Smith
Chicago Mack Sales & Service, Inc.
Creative Marketing Network, Inc. – Mike & Kay Borchardt
Mr. & Mrs. Michael Greco
Illinois Road Builders Association
Joliet Suspension, Inc.
OSCO Oil
Mr. & Mrs. S. R. Van Horne, III
Mrs. Patricia Winkler
Platinum Supporter ($500 - $999)
Gold Supporter ($250-$499)
Knights of Columbus – Mt Carmel Council # 1343
Jeff & Teresa Koebrich
Barbara Jean Lang & Mary F. Lang
Derek & Carol Metcalf
Mesirow Financial
Mustafa Mustafa & Leila Mohammed
Petroleum Technologies Equipment, Inc.
Tubi Style USA, Inc.
LaGrange Medical Healthcare, Ltd.
Mr. & Mrs. Patrick Leone
Gail & James Lillis
Mark Mackey Agency, Inc. – State Farm Insurance
MB Financial Bank
John & Michele McGovern
Ogden Top & Trim Shop, Inc.
PLS Transport – Pete & Heather Sherman
Protected Tomorrows, Inc.
Rev. Gavin Quinn, O. Carm.
John & Lisa Weinberger

Thank You to Our DDA Cash Donors
Don & Arlene Adler
Philip Airey
Damon T. Arnold, MD
Leonard & Suzanne Austin
Rob & Kathy Austin
Auto Clutch & All Brake
Auto Tinting & Rockguard, Inc.
Auto Towing, Ltd. – John Maas
Ann Ballout
Boone & Johnson – Pat Johnson
Don & Michele Brown
John Patrick Bryan
Cassidy Tire & Service
CDW Corporation
Raymond & Mary Louise Cesca
Samuel & Nancy Chmell
Thomas R. Coady, Jr.
Maureen Coons
Bill & Anne Cotter
Creative Printing Network, Inc.
Glenn Der
John & Jeanne DeRaimo
Catherine H. Doolittle
Drivetrain Services & Components, Inc.
Mark & Kathleen Carlson
Kathleen K. Costello, Agent – State
Farm Insurance Companies
Glenn & Mildred Dessing
Jeffrey & Anne DiSandro
Nicholas & Sandra Dispensa
D & L Organization, Inc.
Carol & George Dreger
Anthony & Joan Ebersole
Ann M. Fehrman
H. Susan & Paul Gordon
Larry & Cindy Groh
Barbara & William Gwodz
In Kind Donations
Caffé Baci
dee fritz graphic design
Jimmy’s Place
Midwest Conference Service
Superior Awards
VISOGraphic
Silver Supporter ($100 - $249)
Ronald & Mary Duitsman
David & Jennifer Egan
Elmhurst Lincoln Mercury
Gregory Erickson & Barbara Jo Gilleland
Tod & Patricia Faerber
Gerry’s Landscaping – Gerry &
Sandy Lockhart
Dr. Samuel & Rita Girgis
Steven & Sandy Goldstein
Briana & Martin Hansen
Todd E. Hensley
Frank & Lorraine Herout
David Hoffman
Gary & M. Beth Kay
Norman & Bernice Koglin
Edward C. Kole
J.A.Johnson Paving, Arlington Hts.
Daniel Mackey
Timothy L. Mackey – State Farm
Insurance Companies
Mr. & Mrs. Bill McGhee
Jack & Mary McGovern
McMahon Cartage, Inc.
David & Ellen Meyer
Bronze Supporter (Under $100)
Frances Hensley
Joyce J. Holda
Gerald & Cynthia Homan
Michael & Carolyn Hughes
Huntington Learning Center/Elmhurst–
Dorothy Calek & Laura Sechen
Donald & Patricia Ivansek
Jeffrey Kelterborn & Joan Chao
Allan Kral
Doris Maag
Dr. & Mrs. Rabindra Malhotra
Clem & Sharon Malinka
I. Martusciello
Memorial Donations
Michael & Elizabeth Basile
Eileen M. Byron
William & Dawn Delaney
Leocadia & Edward Klimas
John & Michele McGovern
Dave & Colleen Muno
Debbie Nowacki
Tom & Sandy O’Malley
Midway Truck Parts, Inc.
Thomas & Mary Ellen Nehmzow
James Nelson, MD
NES Traffi c Safety
Thomas & Sabra Nosek
Oak Brook Dental Affi liates P. C.
Dominic & Dorothy Piagnarelli
David & Peggy Poppen
Neal & Marianne Ridenour
Marybeth & Beniamino Ritacca
Scott & Nancy Ellen Schulze
Melissa & Edward Schwartz
Daniel J. Scott
Neal Shevin
Robert & Thelma Siegfried
Six Flags Great America
Daniel & Deborah Sullivan
Kurt Tewes
Lonnie & Sue Tsang
Robert & Diane Van De Velde
Weimer Machine
Howard & Bonnie Weld
Charles Winkler
Allan & Caryn Zelinger
Patricia McGeoghegan
Merrill Lynch – Matching Gift
Pat & Jim Norris
Raymond Rinderer
Mr. & Mrs. Dale Schneider
Sharon Shatkus
Kathryn Shebiel
Richard & Randi Siegfried
Nancy Strock
John & Kathy Szalinski
William & Susan Tuscher
John & Debbie Waitekus
Cody & Caryn Wall
In Memory of…
Elizabeth Jane Klimas
Steven Nowacki
Commemorative Donations
Laura Walsh – 21st Birthday
11

Individual and Corporate Item Donors
Alan Rocca Fine Jewelry
American Theater Company
Aunt Diana’s Old Fashioned Candy
The Bagel Restaurant and Deli
Chuck Blum
Boeger’s Landscape Supply
Mike & Kay Borchardt
Brighton Car Wash & Detail Center
Build-A-Bear Workshop
Camille Buzinski
Caffé Baci
Paul V. Caputo, Sr., DDS
Chicago Bulls
Chicagoland Speedway
C.J.C. Auto Parts
Clearbrook
Jeff Coffi n
Carol Conboy
Craig’s Golf & Tennis Source
Grace Cronin
Curves
Dallas Cowboys – Gene & Jerry
Jones Family
The DeSoto House Hotel
Dixie Kitchen and Bait Shop
Drury Lane
Ed Debevic’s
Elaine Dwulat
Elkhart Lake’s Road America
exotic car share
Sean & Lisa Faul
David Ferrino/Pacifi c Wine Partners
Jon Fey
Fireside Restaurant
Fresh Meadow Golf Club
12
Dr. W. Peter Freischlag
LuEllen Giera
Grand Harbor Resort and Waterpark
Grant’s Appliance, Electronics & More
Graziano’s Brick Oven Pizza
Hawthorne Race Course
Herout’s Honey
Bruce Hornsby
Tony & Lorrie Hereau
Hilton Garden Inn, Hoffman Estates
Intermatic Incorporated
J. Alexander’s Restaurant
Jimmy’s Place
Paul & Janell Jochim
Frem Jodoin
Kane County Cougars
John & Audrey Kapovich
Kinsella Landscape, Inc./Greg Semmer
Gary & Marie Kral
Kevin Kral
LaDonna Italian Restaurant
Linda Lahey
Lake Forest Symphony
Maryann Lanan
Luurs Garden & Flower Shoppe
Marriott Hotels & Resorts, Schaumburg
Marshall Medical Systems
Johnny Mathis
Carol Maxwell
John & Michele McGovern
Maureen McGovern
Corki Meade
Miami Dolphins
Midway Truck Parts
Dave & Colleen Muno
John & Rita O’Brien
Michelle Ojermark
Tom & Sandy O’Malley
OSCO Incorporated
Peter Pasdach
Susan Piccioli
planetcollage.com
Plaza Bank
Plunket
Pursonality – Tara Gregus
Mary Ellen Resche
Joanne Richards
Russian Tea Time
Salon D’Amore
Sue Santoro
Sawa’s Old Warsaw Restaurant
Susan Schoen
The Second City
Six Flags Great America
Mary Ellen Staats
The Sweet Spot Tavern
Dolores Szachnitowski
Stephanie Szachnitowski
Brayer Teague
John Travolta
Trio Salon, Ltd. – Rosalind Ruoti
Tubi Style
Twin Anchors Restaurant
Brian & Kathy Walsh
Kurt Warner
WDRV Chicago
West Suburban Travelers Limousine
Wheel of Fortune
Andy Weinstein
Don & Carol Wise
We truly appreciate all donations and wish to also extend our gratitude to those who were not included in this list.
Wanted: Family Articles
The newsletter is always looking
for family articles and pictures
for publication in our upcoming
editions of the Rett Link. Please
submit them to PJochim@aol.com.
If your family hasn’t been featured
in our family column, we encourage
you to submit your story
about your daughter. Many people
have commented how much they
appreciate those family wirte-ups.
We all go through struggles and
some times we think we might be
the only one going through it. But
we are not alone. So please share
your family write-up or your vacation
trip and help someone else.
If you have any questions,
please email me at PJochim@
aol.com or call 847-310-8876.
All pictures will be returned.
Don’t forget an
Executive Summary
(continued from page 4)
I live at least one moment longer
than my child with special needs,
we understand that we most likely
will not. We owe it to our child
with special needs, and yes, to our
other children, to prepare for when
we are no longer here, and for when
others will be the care providers.

How Do I Organize All of These Papers?
Many of us made New Years
resolutions that centered
around getting organized. We all
have stacks of papers we’ve been
told to keep, but how do we do it?
We are almost through the year and
ready for a new year!. Have you
even started organizing your papers?
In the world of special needs,
having our information organized is
even more important. Understanding
that we have a responsibility to
make sure our estate is planned appropriately,
not only for ourselves
but also for our family including a
family member with special needs,
we have an even greater responsibility
to make sure things are in order.
How can you get started now,
as it feels like a monumental task?
Start sorting. Go through
all of those papers and organize
them into categories. These may
include, but are not limited to:
Mortgage papers
Refi nancing papers
Estate Documents
Funeral arrangements or wishes
Bank statements
Account statements
Life Insurance policies/statements
Lacey’s Gift
Lacey Boyle has a rare disorder
that requires constant monitoring
and caring. The 18-year-old Carbondale
girl is one of only two people
in Southern Illinois diagnosed with
Rett syndrome, a neurological condition
similar to autism. Her mother,
Jane Klucker-Boyle, said there are
few instances her daughter can help
herself, let alone someone else.
But after watching a recent episode
of “The Oprah Winfrey Show”
which featured actress Hilary Swank
donating locks of her hair to help
cancer victims, Klucker-Boyle saw
Lacey’s chance to make a contribution,
one that would come through
her wavy, strawberry blond hair.
Health insurance info
401K and retirement statements
Social Security statements and
correspondence
Medicaid/Medicare documents
Medical documents
Special Needs Trust documents
IEPs
After you’ve fi nished sorting,
keep each category in a folder of some
kind. That way as you receive new
correspondence, you can easily fi le it.
Create a spread sheet or list
showing the above categories.
On this spreadsheet also include:
User names and passwords to
any websites that you use for
banking, accounts, etc.
Attorney(s) name and phone
number
Accountant(s) name and phone
number
Financial Advisor name and
phone number
Protected Tomorrows® Advocate
name and phone number
Keep the folders and spreadsheet/list
in one central place. It may
be in a box in your closet or base-
Lacey and her parents followed
through on the idea, and Lacey had
about fi ve inches of hair snipped to
donate to the Entertainment Industry
Foundation, which has partnered
with hair products maker Pantene to
supply hair for wigs for cancer patients.
“Lots of kids have done this, but
Lacey is disabled and needs help doing
everything,” her father, Steve,
said. “So, even a kid like Lacey can
in this way do something for somebody
else.”
Lacey’s mother also said she
wanted her daughter to participate
to encourage others to grow out
their hair and donate it for the same
by Mary Anne Ehlert, CFP ®
ment, in a fi ling
cabinet, in a
drawer, or in a
safety deposit
box. The best
kind of container
for your
documentation
should be fi reproof.
The key
is to keep this information together
so if you, or any one following
you, are trying to fi nd information
it doesn’t become a scavenger hunt.
Tell someone you trust, power
of attorney, executor of your estate,
friend, relative, where this information
is kept. Caution, if you’re using
a safety deposit box make sure
someone knows where the key
to the box is kept and make sure
they have the signing privileges
to access the safety deposit box.
This task may appear daunting,
but it is worth the time and effort
and will make everyone’s life easier!
And upon completion of this project,
the peace of mind you will fi nd is
enormous. It will actually provide
you energy for another New Year’s
resolution that you want to make!
by Caleb Hale, The Southern
cause.
“It’s just hair; it’ll grow back,”
she said.
13

Rett Syndrome Natural History Study
The Rett Syndrome Association of
Illinois (RSAI) continues to sponsor
the International Rett Syndrome
Foundation Clinics Research Program
National Institutes of Health Rare
Diseases Clinical Research Network
Rett Syndrome Natural History Study
hosted at Rush University Medical
Center by Peter Heydemann, MD,
Director, Section of Child Neurology.
The purpose of the Clinic Event:
1) Provide information and
training to clinicians in the diagnosis
and care of individuals with Rett syndrome
and with mutations in MECP2;
2) Provide a forum for families
to meet other families with Rett syndrome
who might provide support;
3) Provide an opportunity for
consultation by experienced clinicians
in Rett syndrome to individuals
with Rett syndrome and/or mutations
and their families who otherwise
might be unable to travel to existing
Rett Centers in Alabama and Texas;
4) Provide an opportunity for
local enrollment in the National Institutes
of Health-funded Rett Syndrome
Natural History Study, with enrollment
centers in Alabama (UAB),
Texas (Baylor), and South Carolina
(Greenwood Genetic Center).
“The goal of the Study is to collect
accurate data on the longitudinal
(natural history) pattern of progression
among individuals with Rett
syndrome. That is, to gather detailed
historical and physical examination
data and information on survival
and quality of life on a large number
(1,000 overall) with Rett syndrome.
The data collected during this study
will give us a better understanding
of Rett syndrome and will ultimately
enhance the quality of care for all
girls and women with Rett syndrome.
The need for expanded awareness
and clinical knowledge of Rett syndrome
is well recognized by parents
and clinicians active in the care of
individuals with Rett syndrome.”
14
We have just completed our second
year of the Study – hosting four
Clinic Events at Rush - April and November
of 2006 and 2007. The “Chicago
Clinic” is the most well-attending
of the Local Clinics (Oakland,
Chicago, New Jersey, Florida). Over
the two-day most recent November
3-4 Clinic Event, 64 girls and women
with Rett syndrome were evaluated
by three teams. During a group
lunch each day, parents, guests, and
local clinicians participated in a panel
discussion led by the visiting Rett
syndrome Clinicians that provided a
forum for valuable exchange of information
on the clinical care of girls
and women with Rett syndrome. On
Saturday, our families had the opportunity
to visit with Chuck Curley,
IRSF Executive Director and his
wife, Paula, as well as Paige Nues,
Director, IRSF Family Support.
by Marie Kral, IRSF Local
Clinic Coordinator Chicago/Rush
Total Participants Enrolled
through the November
2007 Clinic Event: 89
Illinois 35
Indiana 6
Iowa 4
Michigan 22
Minnesota 2
Missouri 5
Ohio 5
Wisconsin 10
Participants 12 and under: 61
Participants ages 13+: 28
Much gratitude to Dr. Peter Heydemann,
who was host to a prominent
and highly knowledgeable team of
Rett syndrome experts/researchers.
Participating Clinicians/Teams:
Baylor College of Medicine:
Daniel Glaze, MD; Kay Motil,
MD, PhD.; Judy Barrish, BSN, RN
University of Alabama at
Birmingham: Alan Percy, MD; Jane

Study (continued)
Lane, RN, BSN; Suzanne Geerts,
RD, MS; Daniel Tarquino, MD
Greenwood Genetic Center:
Steve Skinner, MD; Joy Graham,
RN; Fran Annese, LMSW
Thank you also to our special
volunteer from Rush Pediatric Neurology:
Debra Michalak, RN Practice
Administrator, for, among many
things, her coordination of the Rush
Facility and Staff, assistance during
the “Check Out” of the forms/consents
necessary for the Rett Syndrome
Natural History Study, assisting with
measuring, troubleshooting, etc., etc.
We are thankful also to several other
volunteers: Kathy Serikaku, OT
(measuring, etc.); Kant Pandya; Michele
McGovern; Johnny McGovern;
Lauren O’Malley; Kristen O’Malley;
Gary Kral; and, Kevin Kral.
Thank you also to the participating
families who are dedicated
to the Study by attending and completing
the required paperwork.
Your participation benefi ts our entire
Rett syndrome community.
Our next Local Clinic Event is
scheduled for April 19-20, 2008.
With four teams available, we will
have the opportunity to assess 90
girls and women at our Spring Clinic.
If you would like to confi rm
your place on the wait list, or be
added to the wait list, please contact
Marie Kral, kraldg@sbcglobal.
net, or phone 630-910-7446 (between
the hours of 9-5 only please).
Openings will be fi lled by qualifi ed
participants on a fi rst-come basis.
Participation in this Clinic Event
is an extraordinary, unprecedented
opportunity for local families. The
Clinic Event is sponsored by the
RSAI, which covers the cost to
host the “Rett Teams” as well as the
group meeting room rental and media
services, all of the supplies, the
lunches/snacks/refreshments, etc.
Your donations to RSAI are welcome
to support the upcoming
IRSF Local Clinic Research Program/Natural
History Study Events.
Kay Borchardt Speaks at DDA
Friends, relatives and parents of
girls with Rett syndrome—thank
you for joining us tonight for this
cause that is so dear to our hearts.
My name is Kay Borchardt and
my daughter with Rett syndrome
is Shelly who is now 22 years old.
When Shelly was diagnosed 20
years ago our lives changed forever.
Gone were the dreams of regular
education, piano lessons, college, a
wedding and independent living. In
its place were concerns regarding
everything from appropriate goals in
school, to how to keep her safe when
she is not with us, to what happens
to her when she ages out of school or
when we can no longer care for her.
The good news was we would never
have to worry about her drinking with
her friends, or being in an accident
with the family car or experimenting
with drugs. The bad news was there
wouldn’t be any friends coming
over to hang out. There wouldn’t be
the day when she came home from
the DMV with her driver’s license.
There wouldn’t be the day that we
packed her up with all her belongings
and moved her into the college dorm.
We needed to talk with other
parents who were traveling down
the same road we were to help us
cope. We discovered the Rett Syndrome
Association of Illinois and
started attending some of their
meetings. Through these meetings
we met a number of terrifi c parents
with whom we shared our struggles,
successes and failures. We attended
conferences where we learned everything
from therapies to implement
at our schools to what is a special
needs trust and why we need one.
We realized that we still had
dreams for Shelly, even if they
weren’t the ones that we had originally
planned. We could still rejoice
in her accomplishments
and
support her
through her
hardships. One
of the most crucial
ways that
we are able to support her is by raising
funds for research and programs as
we are doing here tonight—promoting
awareness of Rett Syndrome and
helping to eventually bring it to an end.
While president of the Rett
Syndrome Association of Illinois
I co-chaired the dinner dance/auction
where the generosity of all of
you helped support critical research.
We’ve come a long way since Shelly
was diagnosed with Rett syndrome,
and we have you to thank for this tremendous
progress. Because of your
fi nancial support, we found the gene
in 1999. Because of you there are
also numerous exciting NEW projects
underway. In the most promising
project, researchers were able to
reverse Rett syndrome in mice. We
anxiously look forward to human trials
at some point in the future. There
are a myriad of other projects underway,
addressing everything from seizures
to breathing problems to cardiac
problems. Collectively, we are
hopeful that these studies will eventually
discover how to eliminate Rett
syndrome. Your dollars are at work
making a difference in the lives of
these very special girls and women.
In conclusion, as a parent, and
I’m sure I speak for all the parents
of girls and women with Rett Syndrome,
we are so grateful for all of
YOU—our families and friends,
who along with fi nancial support,
have offered comforting words, listening
ears and loving hearts because
like the credit card commercial
says “that’s priceless.” Thank you.
15

Why plan now for the
future…there is time
My daughter is young, far from 18,
so why do I need to meet, now,
with an attorney experienced in special
needs legal and future planning? This
is a very common question. Often it
is thought that since you will not be
applying for SSI and adult Medicaid
until your daughter is 18, and further,
do not need to consider Guardianship
until she is 18, that there is no need to
do any legal planning prior to that time.
SSI is a cash (income tax free) program
available at 18 regardless of parent
income or assets, and regardless of
the fact that your daughter will be in
school until the day before she turns 22.
Medicaid, again regardless of parents’
assets and income, pays the medical
bills, government programs such as
In-Home services, and post school
(when the “bus stops coming” at age
22) Development Training Programs,
Work Shops, Supported Employment,
and Residential (CILA or ICF).
If your daughter has $2,000 or more in
her name, she will be unable to secure
SSI and Medicaid as an adult. The Social
Security Administration will look
back 3 years to see if there are assets
or were assets in your child’s name.
The State of Illinois, for residential
services, will look back fi ve years to
see if there are assets or were assets in
your child’s name. UTMA (Custodial
Accounts) and College Bond programs
are irrevocable gifts to your child. Do
you have UTMA accounts in the name
of your daughter? Are grandparents
making gifts, possibly purchasing
savings bonds in the name of your
child? Have you done so yourself? All
such gifts must be made to a properly
drawn and properly administered Special
Needs Trust that qualifi es under
16
the Social Security,
Medicaid, and State
of Illinois rules. Assets
in such a trust
will not be counted.
Have grandparents,
aunts, or uncles in
their wills left an
inheritance to your
daughter? Have
by Brian Rubin
Brian Rubin,
attorney & father
of a 26 year old
son with autism
they named your daughter the benefi -
ciary of an IRA, 401, or Life Insurance
Policy? Have you done so? Any such
inheritance or benefi ciary designation
must not be to your daughter, but rather
to a qualifi ed Special Needs Trust, or
she will not be able to receive SSI nor
be able to access Medicaid programs.
Such problem inheritances might not
be intentional. That is, if your parents
are leaving you an inheritance, but you
predecease them, that inheritance more
likely than not is to be paid to your children.
Do you have a single sibling? Do
you have a married sibling, who does
not have children? If they pass, who
receives their property? Could it be
your daughter? Could it be you, and if
you are not living, then your daughter?
Do not procrastinate, begin your legal
planning and make sure your attorney
is including the extended family in that
planning.
Twenty-fi ve of my 31 years in practice
have been dedicated to planning for my
fellow families, since my child with autism
was 1 year old. If you are outside
of the Chicago metropolitan area, I will
be happy to help you locate a competent
attorney, experienced in special needs
planning. Just email Brian@SNFP.net.
RSAI Offi cers & Directors
John McGovern President
Paul Jochim V.P./Founder
Kathy Medley Secretary
Marie Kral Treasurer
John Gilleland Susan Reedquist
Dale Nusbaum Diane Ross
Published by the Rett Syndrome Association
of Illinois. The purpose of
the association is to inform and educate
others about Rett syndrome and
serve as a support system for families
in Illinois.
Rett syndrome is a neurological
disorder affecting 1 in 10,000 live,
predominantly female births. Development
is normal until at least 6 months
and is followed by a regression that
leads to severe disabilities. The cause
of Rett syndrome is a defect in the
MECP2 gene. There is no known treatment
or cure.
Policy Statement
We welcome ideas from readers on
various techniques of daily care,
education, and general suggestions
that individuals have found helpful.
This exchange of ideas is encouraged.
Parents and others have the choice to
decide if they want to follow through
with any of these suggestions.
We do not, however, as an association,
support or endorse any particular
treatment, therapy, or medication. We
encourage parents to support one another
with suggestions and to contact their
child’s physician for fi nal approval.
Material in the RSAI newsletter
may be reproduced with permission.
Information and all submissions and
correspondence regarding the newsletter
should be directed to Editor Paul
Jochim (847) 310-8876 or contact us
on-line at www.rettillinois.org.
Rett Syndrome
Association of Illinois
One Tower Lane, Suite 1700
Oakbrook Terrace, Illinois 60181
Phone: 630-645-2280
Fax: 630-573-5205