Rett Link - Rett Syndrome Association of Illinois

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					              Rett                                                      Link
 A Publication from the                                                                            Linking the Rett
 Rett Syndrome Association of Illinois                                                          Community Together                                                                              Winter/Spring/2009

                                                                                                              by Marie Kral
2008 Annual Dinner Dance & Auction                                                                   ‘08 DDA Event Co-Chair

O     ctober 4 th marked the Rett
      Syndrome Association of Illinois’
19 Years of Caring and Sharing Annual
                                             coordinating the event: Kay Bor-
                                             chardt, Mike Borchardt, Camille Buz-
                                             inski, Leslie Chatwood, Carol Conboy,
                                                                                       A special “Thank You” to:
                                                                                       • Drury Lane for their expertise and
                                                                                         generosity, and to the staff of Drury
Dinner, Dance and Auction. Over 300          Lisa Faul, Sharon Haas, Cheryl Jagen,       Lane for their excellent food prepa-
family and friends gathered to sup-          Paul Jochim, Frem Jodoin, Gary Kral,        ration and service
port the Annual Fund-raising Event at        Kevin Kral, Shannon Lahey, Maryann        • Dean & Suzy Anderson of Midwest
Drury Lane Oak Brook, IL. We have            Lanan, John McGovern, Maureen               Conference Service / Audio, Visual,
raised over $53,000, which is funding        McGovern, Megan McGovern, Corki             and Technical Assistance, Signage
that will enable the RSAI to continue        Meade, Courtney Pryor, Philip Pryor,        and Tribute Banner
to support quality initiatives in our Rett   Joanne Richards, Tim Selover, and a       • Carol Conboy – Flower Centerpieces
Syndrome community.                          great group of Student Volunteers -       • Frem Jodoin of Jimmy’s Place /
      Our Annual Event was again co-         Julie Bell, Kate Burnier, Elen Chenski,     Table Wine
chaired by Marie Kral and Michele            Laurel Collinet, Jessica Everaert, Kyle   • Caffé Baci – for the chocolate fruit-
McGovern. Although this Event                Freischlag, Katie Gordon, Katie Ilich,      filled truffles
has taken place annually since 1989,         Alex Anne Mastroni, Megan McGov-          • Karyn & Tom Lisowski / Tribute
this is the fifth consecutive year that       ern, Lauren Minardi, Kant Pandya,           Video
Marie and Michele co-chaired this            Jamie Pine, Mary Prasnikar, Allison       • Linda Lahey / Rett Syndrome Angel
Event! Many volunteers generously            Rogala, and Jerry Scott. “WOW” –            Bracelets & Book Marks/Journals
offered their time and talent to assist in   What a GREAT Team!!!                                       (continued on page 14)

                     Rett Syndrome Association of Illinois
                  Celebrating 20 Years of Caring and Sharing
                                  1989 – 2009
Founder’s Message                                                                                          by Paul Jochim

                                                                                  daughters and
C    elebrating 20 years of service to
     the Rett community.
      It’s hard to believe RSAI has
                                          Syndrome Foundation conference
                                          in downtown Chicago. Since 1992
                                          we have promoted October Is Rett
                                                                                  to help fami-
                                                                                  lies that are
been around since 1989.                   Syndrome Awareness month and help       struggling.
      I was thinking about all that       co-sponsor 2 Rett Syndrome Natural      Yo u m a y
RSAI has accomplished in 2008. It         History Studies at Rush University      have an idea
was a great year because of many          Medical Center. Thanks to everyone      on how we
people volunteering and helping out at    on the board of directors and all the   can get more
our events and supporting us.             volunteers and donors that helped       awareness for Rett or an idea for a fund
      In 2008 we held our 19th annual     make a difference in 2008.              raiser. Please get involved and help
Dinner Dance and Auction, our 15th              Now 2009 is here and we are       make a difference.
annual Family and Friends Swim Day,       looking for more supporters and part-         I look forward to seeing you at
our 5th annual Zoo Day. Several RSAI      ners. There is more we want to do and   our events and thanks again for your
members played in the 1st annual Bud-     must do to improve the lives of our     support.
dha Golf outing for Rett Syndrome
(a fund raiser), we sold tickets to the
Six Flags Great America Coasters            IRSF 25th Annual Conference
for a Cause (another fund raiser) and
helped sponsor the International Rett
                                            T    his year’s conference, Celebrating the Torch Within is being held May
                                                 22-25 the Lansdowne Resort & Spa in Leesburg, Virginia. featuring
                                            leading experts in the field of Communication strategies in Rett syndrome
Equipment                                   like Susan Norwell and Linda Burkhart. Top physician specialists from
                                            the Kennedy Krieger Institute Rett Research Center at Johns Hopkins
Exchange                                    such as Dr SakkuBai Naidu will share their collective knowledge around
                                            assessment and treatment of common medical issues. Hear about the
1. 60 cans of PediaSure with Fiber
                                            direction of research from leaders like Dr Carolyn Schanen. Please visit
Enteral Formula Vanilla, expires
                                            our website at to learn more and register. See
April 2009. Must arrange for pick up.
                                            flyer for more details.
Contact: Marie Kral, 630-910-7446
2. Wenzelite Tilt/Recline Chair with              Rett Syndrome Association of IL
Traveler Base. Lightweight stroller
                                              One Tower Lane • Suite 1700 • Oakbrook Terrace, IL 60181
with front swivel wheels and over-
sized rear tires; blue/purple fabric.                Phone: 630-645-2280 • Fax: 630-573-5205
Donated by the Megan Sawyer fami-
ly. Contact Marie Kral–630-910-7446        Calendar of Events
or—to arrange
for your own shipping or pickup.           2009
3. Tumble Forms 2 Trestander. Con-         March 8             16th Annual Family & Friends Swim Day
tact Valerie Stevens at 630-675-6921.      April 25            10th Annual Run for Rett
REMINDER: Anyone who would like            May 2               4th Annual Six Flags Great America Coasters for a
to donate an item, please write a de-                               Cause Day
scription of the equipment along with      May 16              2nd Annual Strollathon for Rett Research
your contact information and forward       June 14             20th Annual Family & Friends Picnic
it to Any costs as-       August 7            2nd Annual Buddha’s Golf Outing
sociated with shipping and/or receiv-      August (TBD)        10th Annual Hammer Open Golf Outing
ing the equipment will be worked out       October 3           20th Annual Dinner Dance & Auction
between the two parties involved. It       October 11          6th Annual Family Zoo Day
is the responsibility of the receiving
party to ensure that the item is safe         Watch for a flyer in the mail with more details for these upcoming
and appropriate for their situation.                events or check our website at
Run for Rett                                 Strollathon                                Hammer Open
                                             by Marcia Adamski
Celebrating Ten Years                                                                   RSAI Received $3000
On the Run
by Diane Ross
                                             S   AVE THE DATE: The Second
                                                 Annual Emma and Friends
                                             Strollathon is set for May 16,

J  oin us in celebrating our tenth
   anniversary of the Run for Rett.
We need you to help make this our
                                             2009. The Stroll will be held at the
                                             Midlothian Meadows Forest Preserve
                                             located at the corner of 159th Street
best year ever. You can help by              and Pulaski Avenue.
bringing ten friends, donating an                The committee is looking for
extra ten dollars, getting ten sponsors,     volunteers to assist in the planning
telling ten people about the run,            and execution of the Stroll. If you can
handing out ten brochures for the run,       help, please contact Marcia Adamski        Juergen Huellen, the Hammer
dropping off brochures at ten fitness         at                  Open Committee Chairman for
clubs or service clubs. This list is             The first ever Emma and Friends         the Knights of Columbus, Coun-
endless of how you can help support          Strollathon, May 2008, brought             cil 11091 gives a check to Paul
this great event.                            in over $16,000 for the IRSF with          Jochim for $3000 for the Rett
     Saturday, April 25, in Busse            approximately 50-75 people in
                                                                                        Syndrome Association of Il-
Woods in Elk Grove, we will be               attendance. We hope the 2009 Stroll
                                                                                        linois. A big thank you goes out
celebrating ten years of success. You        will surpass last year s totals in funds
can run, walk, or volunteer for either       raised and overall attendance.             to all the 119 golfers and the 30
the 5K (3.1 miles) or the one mile               Mark your calendar, and we will        sponsors who participated in this
fun run/walk. Watch the mail in late         see you there.                             years 9th Annual Hammer Open:”
March for the Run for Rett brochure.             The surest path to happiness is        golf outing making it such a big
Please call 847-524-7540 if you have         losing yourself in a cause greater         success in raising money for Rett
any questions.                               than yourself.                             Syndrome research.

From The Arc of Illinois, Family to Family Health Information & Education Center
• PUNS stands for Prioritization of            list, you must have a developmental      • There is not enough money to give
  Urgency of Need for Services.                disability. If you don’t know if you       everyone in Illinois the services they
• PUNS is a list of the people in Illinois     have a developmental disability, the       need. Right now, many people are
  with developmental disabilities who          screener will help you.                    working on a fair way to choose who
  need services.                             • To find your ISC, you can call             gets services.
• PUNS is for everyone who may need            Illinois Life Span at 1-800-588-7002.    • Don’t forget to update your PUNS
  help from the government to pay for          You can also call DHS at 1-888-DD-         form every year. Only people (fami-
  developmental disability services            PLANS.                                     lies) who have completed the PUNS -
  now or in the future.                      • When your PUNS survey is done,             and keep it updated - have a chance of
• PUNS is the first step toward getting         you are on the list. This doesn’t          getting “picked” to receive services.
  services in Illinois. If you are not on      mean that you will get the services      • If you have questions or need help,
  the PUNS list, you are not on the            you need. It just means that you have      you can call Illinois Life Span at
  waiting list for services.                   made the first step.                        1-800-588-7002.
• To get on PUNS, you need to set up         • Some of the services that people may     • If you want more information about
  a date to meet with a Pre-Admission          need are:                                  PUNS or Home-Based Services,
  Screener. These screeners will ask           – In-Home Supports                         go to the Family Support Network
  questions about you and your needs.          – Respite Care                             website at www.familysupportnet-
  These questions are part of the PUNS         – Job Coaches                    
  survey. All screeners work for Inde-         – Group Homes
  pendent Service Coordination Agen-           – And many others                        2/8/09 The Arc of Illinois Family to Family Health
                                                                                        Information & Education Center
  cies or ISC’s. To get on the PUNS

5th Annual Fall Family Zoo Day
                                                        by Kathy Medley

T   he 5th Annual Fall Family Zoo Day was held October 12, 2008 at
    Brookfield Zoo. Nine families attended and we all had a wonderful
time. The weather was bright and sunny, and very warm. Our first 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 barbecue 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 11, 2009. Please
be sure to mark your calendar and plan to join us.

What’s New in Nutrition:
Vitamin D in Rett Syndrome
by Kathleen J. Motil, M.D., Ph.D.                                Suzanne Geerts, M.S., R.D.
The Blue Bird Circle Rett Center                                 UAB Rett Syndrome Clinic and Civitan-Sparks Clinics
Texas Children’s Hospital                                        University of Alabama at Birmingham (UAB)
USDA/ARS Children’s Nutrition Research Center                    Birmingham, AL
Baylor College of Medicine
Houston, TX

“V        itamin D plays an important
          role in the nutritional health
of girls and women with Rett syn-
                                           of dietary calcium for deposition
                                           into bone. Dr. Motil says that, while
                                           some girls and women with Rett
                                                                                    If they are unable to meet their vita-
                                                                                    min D needs with food sources, then
                                                                                    they should receive a supplement in
drome,” says Dr. Kathleen J. Motil,        syndrome have adequate vitamin D         liquid or pill form that provides 400
one of the Rett experts who traveled       body stores, others have insufficient     IU units of vitamin D daily. “Indi-
from Baylor College of Medicine,           or frankly deficient blood levels of      vidualized product selection advice
Houston, TX, to attend the recent          vitamin D, based on her recent stud-     is available through your pediatri-
Rett research clinic held at the Rush      ies of bone mineral content in these     cian, gastroenterologist, registered
University Medical Center.                 individuals. “Our girls have low vi-     dietitian, or pharmacist,” says Ms.
    Dr. Motil reported that the Amer-      tamin D levels for the same reason       Suzanne Geerts, a registered dietitian
ican Academy of Pediatric currently        that unaffected children have low        who also traveled from Birmingham,
recommends that all children who in-       vitamin D levels; they consume in-       AL, to Chicago for the Rett research
gest less than 1000mL/day (~32 oz/         adequate amounts of milk and dairy       clinic. If parents want to know the
day) of vitamin D-fortified milk or         products and they have negligible        vitamin status of their daughter, they
specialized nutrition formulas should      sun exposure,” she says. In addition,    can ask their physician to order two
receive a vitamin D supplement             the use of seizure medications may       blood tests, 25-hydroxyvitamin D
of 400 IU/day. Children who have           contribute further to vitamin D insuf-   and parathyroid hormone (PTH)
milk allergies/intolerances or refuse      ficiency.                                 levels. If blood tests are performed,
to drink milk are at risk for vitamin           Dr. Motil recommends that all       Dr. Motil requests that the results be
D deficiency. Vitamin D promotes            girls with Rett syndrome receive         faxed to her at 713-798-7109 to help
bone health and prevents vitamin D         four 8-oz glasses of milk or four cans   address the questions regarding vita-
deficiency rickets, a nutritional bone      of a recognized commercial formula       min D needs in girls and women with
disorder that continues to occur in        to meet their daily vitamin D needs.     Rett syndrome who require seizure
infants, children, and adolescents in                                               medications.
the United States because of inad-
equate dietary vitamin D intake and
decreased exposure to sunlight. Vita-
min D also promotes host resistance
                                           Wanted: Family Articles
against infections and may prevent              The newsletter is always look-      appreciate those family wirte-ups.
some forms of autoimmune disease            ing for family articles and pictures        We all go through struggles and
(e.g., multiple sclerosis, rheumatoid       for publication in our upcoming         some times we think we might be
arthritis), cancers (breast, ovarian,       editions of the Rett Link. Please       the only one going through it. But
colon, prostate), and diabetes.             submit them to         we are not alone. So please share
    Girls and women with Rett syn-              If your family hasn’t been fea-     your family write-up or your va-
drome have an even greater need for         tured in our family column, we en-      cation trip and help someone else.
vitamin D because they have lower           courage you to submit your story            If you have any questions,
bone mineral density and are at in-         about your daughter. Many people        please email me at PJochim@
creased risk for bone fractures com-        have commented how much they   or call 847-310-8876.
pared with unaffected individuals.                                                  All pictures will be returned.
Vitamin D is important because it
facilitates the intestinal absorption

1st Annual Buddha’s Golf Outing
F    riday, August 1, 2008 Poplar Creek Country Club,
     Hoffman Estates, Illinois-—The raucous fund-
                                                              The 4-person “shamble” format was won by Gary Kazmer,
                                                              Steve, Griffin, Lim Labarge and John Boyle. Jim Luke
raiser formerly known as BUDDHA’S BASKETBALL                  took home the honors in the putting contest. Thank you
BLOWOUT “GOIN’ TO THE RACK” FOR RETT                          to all who participated in making this a successful event.
SYNDROME has gone golfing. The pandamonius                     Special thanks also to our event sponsors.
revelry jumped from the hardwood to the fairway wood.
                                                              All will be welcome and encouraged to come out and play
The event raised nearly $15.000 for research. Over 90         this coming year at a new course on Friday, August 7, 2009!
golfers participated in the event with many more partaking
in the pre- and post-golf festivities. Of course, Stephanie
Schlueter and Jill Jochim were on hand to enjoy a fun-
filled afternoon.

                                                                        The Rett families would like to thank this year’s sponsors: David Ferrino
                                                                        (Bully Hill Winery), Greg Sondag and Ron Gabaldon (InnerWorkings), Jim
                                                                        Siwek (, George Pappagerorge and David Haymes (PHL),
                                                                        Mike Cipolla (CharterSteel), Ray Khatib & Marty Bauer (Khatib & Assoc.),
                                                                        Mike Sorensen & Leo Lesniak (GBL), Greg Semmer (Kinsella Landscape),
                                                                        George Keppler (Bovis), Richard Zisook and Alan Lev (600 Lake Shore
                                                                        Drive), John Sheridan (McHugh), Rich Horwath (STI), Joe Villanti (Metro.
                                                                        Arch), Mike Janis (QDG), Warren Johnson (WJA), Joe Drennan and
                                                                        Mike Jannusch (Sedgwick’s), Jimmy Waldron (ThemReps), Tom Jacobs
                                                                        (T & K), Joe Minyard (Mad Croc), Joe Ferrino (Landor), Jerry Lavey
                                                                        (The Gym), Aaron Lavey (Website), Mike Gallo (FPO), Chuck Blum (the
                                                                        “Serene”), and all who volunteered.

                                           by Marie Kral, IRSF Local
Rett Syndrome Natural History Study Clinic Coordinator Chicago/Rush
T   he Rett Syndrome Asso-
    ciation of Illinois (RSAI)
continues      to     sponsor     the:
                                             Participating Clinicians/Teams:
                                             • Baylor College of Medicine:
                                         Jeffrey Neul, MD, PhD.; Kay Motil,
                                                                                 to several other volunteers: Kathy
                                                                                 Serikaku, OT (Measuring, etc.);
                                                                                 Gary Kral; Shannon Lahey; The Mc-
    • International Rett Syndrome        MD, PhD.; Judy Barrish, BSN, RN         Governs – Michele, Johnny, Danny,
Foundation Clinics Research Pro-             • University of Alabama at Bir-     their cousins Andy and Brad Muno,
gram                                     mingham: Alan Percy, MD; Jane Lane,     and Kristen and Lauren O’Malley;
    • National Institutes of Health      RN, BSN; Suzanne Geerts, RD, MS         Kant Pandya; and, Cassie Wells.
    • Rare Diseases Clinical Re-             • Greenwood Genetic Cen-
search Network                           ter: Steve Skinner, MD; Joy Gra-            Thank you also to the partici-
    • Rett Syndrome Natural His-         ham, RN; Fran Annese, LMSW              pating families who are dedicated
tory Study                                                                       to the Study by attending and com-
hosted at Rush University Medical             Thank you also to our special      pleting the required paperwork.
Center by Peter Heydemann, MD,           volunteer from Rush Pediatric Neu-      Your participation benefits our en-
Director, Section of Child Neurology.    rology: Debra Michalak, RN Prac-        tire Rett Syndrome Community.
                                         tice Administrator, for, among many
     Over 70 families were sched-        things, her coordination of the Rush        Several papers have been pub-
uled for Study visits at the Chicago/    facility and staff, assistance during   lished sighting data already gath-
Rush October 25-26, 2008 Clinic          the “Check Out” of the forms/Con-       ered from the Natural History
Event.     The ever-popular Lunch/       sents necessary for the Rett Syndrome   Study. If you would like to have
Panel Discussion, hosted by RSAI         Natural History Study, troubleshoot-    these publications forwarded to
both Clinic days, provides a great op-   ing, etc., etc. We are thankful also                  (continued on page 14)
portunity for our families to network
as well as interact with the Panel of
visiting Rett syndrome Clinicians.

    We have reached an amazing
milestone of 100 Families participat-
ing at our local Chicago Clinic Event:

    Illinois                   36
    Indiana                    10
    Iowa                        4
    Kansas                      1
    Michigan                   22
    Minnesota                   3
    Missouri                    6
    Ohio                        8
    Wisconsin                  10

    Participants ages 12 and under: 69
(through 10/08 seen twice annually**)
    Participants ages 13+: 31 (seen

    Our continued gratitude to Dr.
Peter Heydemann, who was host to
a prominent and highly knowledge-
able team of Rett syndrome experts/

               19th A
    Dinner Dance & Au

uction Celebration

               Thank You to Our DDA Cash Donors
                               Platinum Angel Sponsor ($15,000 Plus)
                                      Adam “Buddha” Lavey – Fundraiser

                                  Silver Angel Sponsor ($2,500 Plus)
                                        Golden Heart Home Health, Inc.
                    Knights of Columbus – St. Margaret Mary Council # 11091 of Algonquin, IL

                                 Bronze Angel Sponsor ($1,000 Plus)
                                               Theresa M. Boyle
                                               Bob Brigham, Jr.
                                      Case Lots, Inc. – Gary & Rose Smith
                                   Thomas Conidi - Wachovia Securities LLC
                           Creative Marketing Network, Inc. – Mike & Kay Borchardt
                                               Gelber Foundation
                                           Mr. & Mrs. Michael Greco
                         Knights of Columbus – St. John Council # 3738 of Westmont, IL
                                           Jess & Jennifer Lomibao
                                                   OSCO Oil
                                        Mr. & Mrs. S. R. Van Horne, III
                                             Mrs. Patricia Winkler

                                  Platinum Supporter ($500 - $999)
 Crivolio Family                                                   Jeff & Teresa Koebrich
 Custom Cars Unlimited                                             Joe & Carol Koenig
 Dr. Jeffrey D. Eaton, DDS, PC & Dr. Rebecca G. Eaton, DDS         Barbara Jean Lang
 Ferrari Club of America – Central States Region                   Edward R. LeFevour & Associates, Ltd.
 Jean Gershuny                                                     David E. Marose
 Global Industrial Products, Inc.                                  Marshall Medical Systems & Equipment
 Jacob Press’ Sons, Inc.                                           Derek & Carol Metcalf
 JC Penney Company Fund, Inc.                                      Protected Tomorrows, Inc.
 David & MJ Jones                                                  Andi Stelzner Fund
 Knights of Columbus – Mount Carmel                                Richard & Michelle Walsh
          Council # 1343 of Mt. Carmel, IL                         John & Lisa Weinberger

                                      Gold Supporter ($250-$499)
 Brian Rubin & Associates
 Pete & Mary Kay Brown                                             MB Financial Bank
 Continental Acura & Audi of Naperville                            John & Michele McGovern
 Downers Grove Junior Woman’s Club                                 Vera & Gjuro Petras
 John & Nancy Gilleland                                            Petroleum Technologies Equipment, Inc.
 Leonard & Dana Kapovich, Sr.                                      Rev. Gavin Quinn, O. Carm.
 Rob Klein                                                         Hannah Richtman – School Fundraiser
 Gary & Marie Kral                                                 Mr. & Mrs. Timothy Roberts
 Gail & James Lillis                                               Lee & Barry Savage
 Mark Mackey Agency, Inc. – State Farm Insurance                   ValvTect Petroleum Products Corporation

                Thank You to Our DDA Cash Donors
                                         Silver Supporter ($100 - $249)
Don & Arlene Adler                        Jane E. Fiala                        Midway Truck Parts, Inc.
Terri & David Alexander                   Gerry’s Landscaping – Gerry &        Tom & Mary Ellen Nehmzow
Leonard & Suzanne Austin                  Sandy Lockhart                       Oak Brook Dental Affiliates -
Rob & Kathy Austin                        Barbara Jean Gilleland                    Dr. James Chidester
Automotive Repair Specialists             Maralyn Gilleland                    J. T. & S. H. O’Brien
Auto Tinting & Rockguard, Inc.            James & Beth Gilleland               Ogden Top & Trim Shop, Inc.
Auto Towing, Ltd. – John Maas             Bill & Sharon Haas                   Dominic & Dorothy Piagnarelli
Stratis & Nadine Bahaveolos               Sharon Heinzeroth                    PLS Transport – Pete & Heather
Karyn & William Beukema, Jr.              Todd E. Hensley                           Sherman
Kathy Bogdan                              Frank & Lorraine Herout              Neal & Marianne Ridenour
Boone & Johnson CPA’s                     David Hoffman                        Ray Roche
Ken & Karin Broton                        Roger & Deborah Jensen               Neal Shevin
Don & Michele Brown                       Sally Jensen & William McGhee        Robert & Thelma Siegfried
John & Bonnie Calfa                       Roger & Darla Johns                  Bea & Steve Sierszulski
Ray & Mary Lou Cesca                      Bill & Heidi Kapovich                Jean-Philippe & Christine Sitbon
Samuel & Nancy Chmell                     Gary & M. Beth Kay                   Karen & Terrence Skala
Thomas R. Coady, Jr.                      Norman & Bernice Koglin              Six Flags Great America
Anne & Bill Cotter                        Edward C. Kole                       Lonny & Sue Tsang
Scot & Margaret Crowell                   Ken & Deborah Koules                 Dr. Anthony A. Tze
Glenn Der                                 Harry & Dianne Leadingham, Jr.       Robert & Diane Van De Velde
John & Jeanne DeRaimo                     Mr. & Mrs. Dan Mackey                Weimer Machine
Drivetrain Services & Components, Inc.    Tim Mackey – State Farm Insurance    Howard & Bonnie Weld
Vic & Lorna Dudzik                        Madden Glass-Dan/Diane Nowaczyk      Charles Winkler
Ronald & Mary Duitsman                    Patricia McGeoghegan                 Carol & Don Wise
Elmhurst Lincoln Mercury-John Moroni      McMahon Cartage, Inc.                Arnold & Erika Zimmerman
Tod & Patti Faerber                       Merrill Lynch – Matching Gift
                                         Bronze Supporter (Under $100)
Lawrence & Annette Ballard                LuEllen Giera                        Kevin Krauss
Kim & Dave Betts                          Mary & Dan Goeckner                  Dan & Pam Liska
Alicia & Stephan Bild                     Joan Grassman                        Clem & Sharon Malinka
James & Judith Bindon                     Larry & Cindy Groh                   Kathy McGeoghegan
Ashley Borchardt                          Frances Hensley                      Mark & Jeannine Moscinski
Jennifer Borchardt                        Illinois Portable Truck Inspection   Pat & Jim Norris
Bill & Kathy Braun                        Karen Kalcic                         Mr. & Mrs. Dale Schneider
Joan Chao                                 Michael & Melinda Keck               Rick & Randi Siegfried
D & M Corvette Specialists, Ltd.          Allan Kral                           James Stevenson
Jeffrey & Anne DiSandro                                                        Sandra Vosepka
Nancy Formanek                                Memorial Donations               John & Debbie Waitekus
Gerry & Diane Gajos                             Mike & Kay Borchardt           Kevin & Peggy Worland
Mary Jane Gentleman                                 John Crivolio
                                                    Diane DeMay                       In Memory of…
     In Kind Donations                           Jeff & Valerie Jalon                  Patricia Crivolio
    A-Z Entertainment, Ltd.                     Robert & Marilyn Kelly                    John Love
            Caffé Baci                             David E. Marose                    Catherine R. Marose
          Carol Conboy                             Tiffany Morton                        Steve Sopocy
     dee fritz graphic design                        Laurine Nitz              Commemorative Donations
         Jimmy’s Place                           Mary & Fred Pauksta            Kari Anne Kral – 10th Birthday
   Midwest Conference Service                       Karla Salmon                Gerry Lockhart – 65th Birthday
        Superior Awards                             Spencer Stuart              Marissa Noelle Goodhew – Con-
          VISOGraphic                              Patricia Winkler             firmed Rett Syndrome Diagnosis

                               Corporate Item Donors
 Alan Rocca Fine Jewelry                Elkhart Lake’s Road America              Marathon Oil Corporation
 Al’s Char-House                        exotic car share                         Marconi’s Ristorante
 Anyways Restaurant                     Fireside Restaurant                      Marshall Medical Systems
 Arlington Park Racetrack               Flagg Creek Golf Course                  Oak Brook Golf Club
 Aunt Diana’s Old Fashioned Candy       Food4Less                                Oak Meadows Golf Club
   Makers                               Fresh Meadows Golf Club                  Oasis Women’s Fitness & Spa
 Avanti Fine Furniture                  Golf Galaxy                              OSCO Oil
 The Bagel Restaurant & Deli            Grand Harbor Resort & Waterpark          P. F. Chang’s China Bistro
 Best Western Midway Hotel              Grants Appliances Electronics &          Pursonality – Tara Gregus
 Boeger’s Landscape Supply                 More                        
 Caffé Baci                             Graziano’s Brick Oven Pizza              Plaza Bank
 caffe DeLuca                           Herout’s Honey                           RONJON Productions
 DiLeo’s Pizzeria                       Hildebrand Sporting Goods                Rosangela’s Pizzeria – Ray & Lea
 Dr. Paul V. Caputo, Sr., D.D.S         Hilton Hotels Chicago/Oakbrook             Easterhouse
 CasaMagna Marriott Puerto Vallarta     Hollywood Blvd. – A Cinema, Bar          Salon D’Amore
   Resort & Spa                            & Eatery                              Sawa’s Old Warsaw Restaurant
 Cavanaugh’s Bar and Restaurant         Ina’s                                    Six Flags Great America / Hurricane
 Chicago Bulls                          The Irish Times Pub & Restaurant           Harbor
 Chicago Marriott Oak Brook             J. Alexander’s Restaurant                The Sweet Spot Tavern
 Clearbrook                             Jacqueline Nails                         Target
 The Cork                               Jimmy’s Place                            Two Sisters and a Shovel
 Costco Wholesale                       Kinsella Landscape, Inc./Greg Semmer     Ultimate Golf, Inc.
 The DeSoto House Hotel                 Brian Klimes – FOCIS Promotions          Vera Bradley – Oakbrook Center
 Destination Kohler                     Lake Forest Symphony                     Via Veneto Restaurant
 Drury Lane                             A Little Red Heart/Wedding &             Wright Service Corp
 Ed Debevic’s                            Event Photograph/Larissa Rolley         York Theatre

                               Individual Item Donors
 Harold Baines                          Allyson Haas                             Dan Pasqua
 Mary Jo & Doug Basler                  Tony & Lorrie Hereau                     Susan Piccioli
 Linda Black                            Tom & Mary Ilich                         Judy Poole
 Chuck Blum                             Paul & Janell Jochim                     Karen Quinn
 Jennifer Borchardt                     Jim & Frem Jodoin                        George & Patricia Richards
 Mike & Kay Borchardt                   Brian & Lynn Johnson                     Joanne & Jeff Richards
 Bill Brassil                           Ron Kittle                               Mary Kay & Brad Russell
 John & Tracy Brienen                   Gary & Marie Kral                        Dan & Susan Schoen
 Ron & Camille Buzinski                 Kevin Kral                               Mary Ellen Staats
 Tim Carey                              Linda Lahey                              Nancy Strock
 Peter & Carol Conboy                   Jack & Maryann Lanan                     Dolores Szachnitowski
 Sean & Lisa Faul                       Sarah & Alan Leatherman                  Stephanie Szachnitowski
 Jon Fey                                Johnny Mathis                            Dieter & Veronica Tantius
 Dr. W. Peter Freischlag                Carol & Wayne Maxwell                    Sally & Mike Thiesen
 Gerry & Diane Gajos                    John & Michele McGovern                  Joe & Sheila Tracy
 Mark Giangreco                         Maureen McGovern                         Katy Tracy
 LuEllen Giera                          Dave & Colleen Muno                      John Travolta
 Beth Gilleland                         Dale & Karol Nusbaum                     Rusty Wallace
 Mary & Dan Goeckner                    Tom & Sandy O’Malley                     Brian & Kathy Walsh
 Ozzie Guillen                          Patty Opfer                              Carol & Don Wise
 We truly appreciate all donations and wish to also extend our gratitude to those who were not included in this list.

Where Does My Money Go?
                                                                by Mary Anne Ehlert, CFP • Protected Tomorrows, Inc.®

W       e were warned that the price
        of groceries was increasing
and it did. We were warned that ed-
                                       Some of the figures may surprise
                                       you. For example, think of all
                                       the gifts you probably buy. These
                                                                              coffee house?
                                                                              How about
                                                                              one less
ucational costs were increasing and    include, holidays, birthdays, show-    DVD rental
it did. These are only two examples    ers, weddings, graduations, chris-     a week? Can
of increased prices; we see more       tenings, etc. The list goes on and     you cut two
and more on the horizon everyday.      on. When we talk about food and        trips to the
For most of us, our incomes didn’t     groceries, we’re not just talking      fast food lane
increase accordingly. So what can      about the weekly “big” trip to the     a week? This
we do? We still need these products    grocery store. What about the quick    list will help you look for ways to
but how do we figure these and all      trips in between? Be honest about      cut your monthly expenses. The goal
the other “extras” into our budget?    what you spend in restaurants and      is not to place you on a tight budget,
                                       yes, this includes trips through the   but to make you aware of what you
The first step is to take a realistic   drive-through! Don’t forget the        are spending.
and honest look at what you spend      special programs for your kids: park
every month and compare it to your     district programs, dance classes,      Mary Anne Ehlert is the President
monthly income. You can’t try to       music lessons, etc. List all your      and Founder of Protected Tomor-
make ends meet until you know          expenses in categories for a given     rows®, an advocacy company that
exactly what you’re bringing in        month. Remember, be honest about       provides comprehensive life plan-
every month and how you’re spend-      writing everything down and do not     ning that addresses the educational,
ing it. But remember, the key to       underestimate your spending. It all    residential, financial, legal, health
this is realistic and honest numbers   adds up.                               care, government benefits, employ-
and it isn’t just going through your                                          ment and recreational needs of the
checkbook to come up with these        If you ask yourself “Where does all    individual with special needs. For
numbers. You will need to do some      my money go?” just take a look at      more information, contact info@
digging and searching to come up       your list. What about giving up a or visit
with accurate figures.                  trip or two a week to the specialty

                                                       Save the Date
                                               Saturday, October 3, 2009
                                         Rett Syndrome Association of Illinois
                                            20 Years of Caring & Sharing
                                          Annual Dinner, Dance and Auction
                                                Drury Lane in Oakbrook
                                               For more information call or email:
                                       Marie Kral (630)910-7446 or     Michele McGovern (708)447-3961

 2008 Annual Dinner Dance & Auction                                    (continued from page 1)
 • Dee Fritz / Graphic Design                quin, IL, Annual “Hammer Open”          ticipation; we could NOT have done
 • VISOgraphic / Program Book                Event – Tom & Nola Schlueter            it without you – your many contribu-
    Printing                               • Knights of Columbus, St. John           tions of time, talent, and resources cul-
 • Jon Fey / Superior Awards                 Council # 3738 of Westmont, IL          minated in another successful event.
 • A-Z Entertainment / DJ & Auction-             Dr. Peter T. Heydemann, MD,                Save the Date – Mark your Cal-
    eer                                    Section Director, Pediatric Neurology,    endars! The RSAI “20 Years of Car-
        The generosity and participa-      Rush University Medical Center was        ing & Sharing” Annual Dinner, Dance
 tion of so many of our RSAI families      recognized for his continuing support     and Auction will be held October 3,
 and friends made this annual event        of the RSAI-sponsored IRSF Natural        2008 at Drury Lane Oakbrook.
 quite extraordinary! The Donor Lists      History Study semi-annual Clinic                 The Rett Syndrome Association
 reprinted in this newsletter highlight    Events. Dr. Heydemann has gener-          of Illinois strives to provide funding
 just how well-supported the RSAI is       ously hosted the semi-annual Clinic       for research, awareness and educa-
 in our Illinois community.                Event at his Rush University Medical      tion, and family informational support
        Several people/organizations       Center Clinic.                            and networking activities. The Rett
 were recognized during the evening              Kathy Serikaku was also rec-        Syndrome Association of Illinois is
 for their continuing, generous finan-      ognized as an outstanding Volunteer       a not-for-profit 501(c)3 Charitable
 cial support of RSAI:                     for her caring support of our Rett        Organization and your donations are
 • Adam “Buddha” Lavey - Platinum          syndrome community. Kathy is a 30-        tax deductible to the extent allowable
    Angel Sponsor. We are very grate-      year veteran Occupational Therapist       by law.
    ful to Adam for his many years         and has volunteered at all of our semi-          Contact Marie Kral, 630-910-
    of incredible generosity in raising    annual Clinic Events since April 2006     7446 -; or
    funds for research – over $115,000     assisting the Baylor Team.                Michele McGovern, 708-447-3961
    to date.                                     Our Annual Event is a time to       - if you
 • Golden Heart Home Health, Inc. –        pay Tribute to our girls and women        would like more information about
    Jeff & Jennifer Lomibao                and the many families facing the daily    participating in the RSAI Annual
 • Knights of Columbus, St. Margaret       challenges of Rett Syndrome. We are       Fundraiser. All are welcome – every
    Mary Council # 11091 of Algon-         grateful to each of you for your par-     contribution does make a difference!

 Rett Syndrome Natural History Study                                   (continued from page 7)
    you via e-mail, please contact         tinue to be seen twice-annually and       added to the wait list, please con-
 Marie Kral (        those participants over 6 will be seen    tact Marie Kral, kraldg@sbcglobal.
                                           once annually. Please contact Marie       net, or phone 630-910-7446 (be-
     Our original schedule included        Kral if you have any questions about      tween the hours of 9-5 only please).
 six Clinic Events between April 2006      scheduling for the upcoming Clinic.       Openings will be filled by qualified
 and October 2008. Fortunately, we                                                   participants on a first-come basis.
 have been granted an extension from            A proposal has been submitted
 the NIH to include one additional         seeking a 5-year renewal of the NIH-          The Clinic Event is sponsored by
 Chicago/Rush Clinic Event, sched-         funded Study – which would extend         the RSAI, which covers the cost to
 uled for the weekend of April 25-26,      the Natural History Study through         host the “Rett Teams” as well as the
 2009. We have also just received          Spring 2014. This not only will allow     Group Meeting room rental and me-
 confirmation that the protocol of the      us to continue scheduling visits for      dia services, all of the supplies, the
 Study has been adjusted, which will       those families already participating,     lunches/snacks/refreshments,      etc.
 allow us to enroll additional families:   it will also give us the opportunity to
                                           continue to enroll many more families        Your donations to RSAI are wel-
     **Families currently participat-      to the Chicago Local Clinic. We will      come to support the upcoming IRSF
 ing in the Study have been notified        be informed of the status of the con-     Local Clinic Research Program/
 of a change in the protocol for fre-      tinued funding before Spring 2009.        Natural History Study Event or for
 quency of return visits. For the April                                              any of RSAI’s quality Programs.
 25-26, 2009 Clinic, families with            If you would like to confirm
 children ages 5 and under will con-       your place on the wait list, or be

Planning Your Estate…A Simple Will Isn’t Enough                                                                    by Brian Rubin

M     y fellow parents of a child
      with special needs face many
challenges, but none is more press-
                                            else when you are out of town), Stand
                                            By Guardian Declaration (delegating
                                            your authority in event of your dis-
                                                                                         What Else Do
                                                                                         Yo u        Need?
                                                                                         Parents of a child
ing than our concern about what will        ability). While most people prefer           with a special
happen to our child in the event of our     simplicity in their documents, when          needs should also
death or incapacity. Because parents        there is a child with special needs in the   be thinking about
of children with special needs often        mix, a “simple” will not be sufficient        another important B r i a n R u b i n ,
have a difficult time making these          to provide for that child’s needs. There     planning instrument attorney & father
decisions, procrastination and avoid-       should be a comprehensive plan to pro-       -- a care plan, (also of a 26 year old
ance may result. Too often, nothing         vide for those needs, and it will include    called a “letter of in- son with autism
gets done until very late in life, if the   a “special needs trust”, and possibly        structions” or “letter
parents live long enough and have           two such trusts (there are two kinds).       of intent”) established by the family
their mental capacity. Estate plan-              A special needs trust has a two-        to make a future guardian and trustee
ning for a family that includes a child     fold purpose -- providing for man-           aware of the child’s needs. This care
with special needs can be much more         agement of assets for the child with         plan should be updated every year,
complicated than for other families. A      special needs, while protecting the          and a copy should be kept with the
“simple” plan will not suffice, but the      child’s eligibility for means-tested         trust and other planning documents. A
opportunity to make a real difference       government benefits, such as SSI and          good, current care plan will describe
in the life and future of our children      Medicaid. To the extent that medical         the educational, social, medical, fi-
with special needs should motivate us       care, food, shelter, etc. are not other-     nancial, and other issues faced by our
to plan, carefully, and early. No one       wise provided, the trust can even help       child with special needs. It will also
knows how many days any of us have.         to ensure coverage for basic needs.          describe our child’s needs and his or
                                                 The funds in a special needs trust      her ability to attend to those needs on
G e t t i n g         S t a r t e d :       are usually available for “extras,” (as      a daily basis. Any special and even
Sometimes the problem of inertia is         opposed to necessities,) during our          basic information should be included,
heightened by parents’ concern about        child’s lifetime. These extras might         as well as information that will be
getting the plan “right” the first time.     include vacations, companions, tele-         helpful to the trustee and guardian
Once a plan is initially prepared, it is    visions, or massage therapy, to name         when considering our child’s housing
easy to make changes or amendments          a few. It may also provide for typi-         and social situation. In addition, it is
as times, needs and understanding           cal family gifts o behalf of our child       a good idea to include information
change. For instance, the selection         with special needs, and charitable           about the family’s hopes and wishes
of a guardian for a minor child might       contributions to organizations that          for the beneficiary’s transition from
favor grandparents, uncles or aunts.        either provide or may provide in the         minority to majority and adulthood.
As time goes on and family dynam-           future for our child with special needs.          As an additional benefit, proper
ics change, the child’s brothers and             As part of the planning process,        preparation and “funding” of a trust
sisters may be more logical choices.        parents of a special needs child should      during the parents’ lifetime may help
It may even be advisable to allow the       consider the potential for public ben-       avoid the probate process upon the
decision about caretakers to shift from     efits in the future to ensure that they       death of the parents. During the plan-
one generation to the next as the child’s   are not lost. This may include Supple-       ning process, there may even be an
siblings become mature, respon-             mental Security Income (SSI,) food           opportunity to minimize or eliminate
sible and ready to take on the future       stamps, housing, home based support,         state or federal estate taxes, and in some
needs of the child with special needs.      and possibly other resources. Most           cases even to help plan for the parents’
                                            parents, however, want to go further. If     own future long-term care needs.
Elements of the Plan:                       the availability of public or other ben-
In preparing the plan, the usual docu-      efits was ever diminished in the future,      Use Qualified Professionals:
ments should be completed, including        most would hope that the money in the        It is important to contact profession-
advance directives, such as a “Health       trust would be available to provide for      als who are knowledgeable in this
Care” Power of Attorney and “Prop-          even basic necessities. With proper          area, as the rules are both complex
erty” or Financial Power of Attorney, a     planning before death or incapacity,         and fluid. Services vary by state
will, Short Term Guardian Declaration       parents can include such provisions.         and often by region, and programs
(delegating your authority to some one                                                   in place (continued on page 16)

 Constant Contact                                               by Susan Reedquist
                                                                                      RSAI Officers & Directors

 P    lease sign-up to receive information on up-coming RSAI Events through
      your email. Hi, my name is Susan Reedquist and I have been a RSAI
 board member for three years. I have volunteered to create and manage our
                                                                                      John McGovern
                                                                                      Paul Jochim
                                                                                      Kathy Medley                Secretary
 on-line emailing initiative beginning in February 2009. In the beginning, my
                                                                                      Joanne Richards            Treasurer
 objective is to bring you timely information on the wonderful social activi-
 ties, fundraisers, and conferences RSAI brings to your family. As we proceed
                                                                                      John Gilleland       Susan Reedquist
 through the first year we will expand our content to include those topics most
                                                                                      Dale Nusbaum             Diane Ross
 beneficial to you.
                                                                                      Marie Kral             Nancy Strock
      I will be setting up a link on our website: where you
 can opt-in to receive these email up-dates. You will be able to reply to me
                                                                                      Published by the Rett Syndrome As-
 whenever you have questions, comments or suggestions. I look forward to
                                                                                      sociation of Illinois. The purpose of
 meeting you on-line and in person at our next event!                                 the association is to inform and edu-
                                                                                      cate others about Rett syndrome and
                                                     Estate Planning                  serve as a support system for families
                                                     (continued from page 15)         in Illinois.
                                                                                          Rett syndrome is a neurological
                                                     today may not exist, or may      disorder affecting 1 in 10,000 live,
                                                     be quite different next year.    predominantly female births. Develop-
                                                          The trustee and guardian    ment is normal until at least 6 months
                                                     must be armed with informa-      and is followed by a regression that
                                                     tion and strategies as well.     leads to severe disabilities. The cause
                                                     The details of the adminis-      of Rett syndrome is a defect in the
                                                     tration and taxation of the      MECP2 gene. There is no known treat-
                                                     Special Needs Trust can be       ment or cure.
                                                     quite involved, and a quali-                   Policy Statement
                                                     fied professional should be       We welcome ideas from readers on
                                                     consulted to assist in that      various techniques of daily care,
                                                     process. Please email (Bri-      education, and general suggestions
                                                     an@SpecialNeedsFuture-           that individuals have found helpful.
                                            or Brian@           This exchange of ideas is encouraged.
                                            to receive       Parents and others have the choice to
                                                     a manual on the administra-      decide if they want to follow through
                                                     tion of special needs trusts,    with any of these suggestions.
                                                     as well as other reading ma-         We do not, however, as an associa-
                                                     terial on this topic. One of     tion, support or endorse any particular
                                                                                      treatment, therapy, or medication. We
                                                     the best sources to locate an
                                                                                      encourage parents to support one anoth-
     Rett Syndrome                                   experienced special needs
                                                                                      er with suggestions and to contact their
                                                     planning attorney, is to con-
                                                                                      child’s physician for final approval.
     Handbook, Second Edition                        tact The Arc of Illinois (www.       Material in the RSAI newsletter
                                           , or visit the    may be reproduced with permission.
     T    his is the book that every parent,
          grandparent, teacher, therapist, doctor,
     and caretaker must have! Anyone who is in
                                                     web site of The Special Needs
                                                     Alliance (www.SpecialNeed-
                                                                                      Information and all submissions and
                                                                                      correspondence regarding the newslet-
                                           , the national,    ter should be directed to Editor Paul
     the life of a loved one with Rett syndrome
                                                     non-profit, association of       Jochim (847) 310-8876 or contact us
     should own a copy of this book (called
                                                     experienced special needs        on-line at
     by many the “Rett Syndrome Bible”).
                                                     planning attorneys. Mem-
         Order your copy at
                                                     bership is by invitation only,                       Rett Syndrome
         1-800-818-RETT or at the                                                                   Association of Illinois
                                                     and most members are them-
         website:                                                One Tower Lane, Suite 1700
                                                     selves parents or siblings of
         Special Price $30.00 (Plus S&H)             someone with special needs.          Oakbrook Terrace, Illinois 60181
                                                                                                    Phone: 630-645-2280
                                                                                                       Fax: 630-573-5205

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