The Children’sMedical ResearchFoundation, Inc.®

The latest news on Kirby Wilson and friends and the search for a cure for Sanfilippo Syndrome

KirbyGramDecember 2012Our goal is to create awareness of Sanfilippo Syndrome and other neuro-genetic disorders, fund medical research and find a cure.

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F or the past 18 years Brad and I have spoken of Kirby’s qualities of strength andcharacter. Her vibrant energy never has allowed us to dwell on what might havebeen but instead has given us a reason to be thankful for what we have – joyfulmoments throughout the day.

Each morning Kirby has awakened, smiling with renewed enthusiasm for small delights,relishing joy. Certainly, there are days when as adults we lose sight of this simple gift,letting the pressures of our lives overshadow what we all have within us – the choice tofind joy and smile, at least for a moment in each day. Brad and I know Kirby’s joy is stillwithin her. We find comfort in this and delight when a twinkle in her eyes appears justbefore that now-rare but ever-joyful smile.

We thank you for your years of devotion to The Children’s Medical Research Foundation.Your donations have and will enable us to continue to participate in the funding ofresearch, bringing it to a successful conclusion – a cure for Sanfilippo and giving familiessuch as ours a lifetime of joyful moments with their children.

May the blessings of the season be yours, now and always.

– Sue and Brad Wilson

Dear Friends,

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“Fore” Kirby

The Seventeenth Annual “Fore”Kirby Golf Fun Raiser was heldJune 1st at Ruffled Feathers GolfClub in Lemont. This year’s 14participants raised more than$28,000 “fore” Kirby! Sue comments, “This is always afun event for Brad and me as itenables us to relax with friendswhile raising money each year.We are very fortunate to havethese people in our lives, alwayswilling to help us as a family ordo whatever it takes for TheFoundation to succeed.” The Foundation is activelyseeking new participants for thisunique golf outing. The event isheld each year on one of the firstFridays of summer. Participantsare given pledge cards and areasked to secure pledges fromfriends and associates for each ofthe 18 holes of golf to be played.

Upon completion of the round,scorecards are collected fromeach player. The Foundationthen contacts all of those whohave pledged with the results oftheir player's round and the totalamount due. Participants alsoare asked to pay for their roundof golf, which means that 100%of the donations go directly toThe Foundation! Cocktails anddinner are served immediatelyfollowing at the Wilsons’ home.Interested in joining the fun?Please contact Sue at (708) 784-0631 or curekirby@sbcglobal.net to learn more.

The Foundation GivesThanks . . .To Margaret Dawe, NicholasMegofna, Mark Leavitt, RalphSiegel, Raymond Brazell, andGregory Miller, who designatedThe Foundation as their charityof choice in their employers’United Way campaigns. Thanksfor uniting for Kirby!

To Kirby’s friend, DorothyFlannery, who celebrated her85th birthday by requesting thatdonations be made to supportThe Foundation’s mission. Ourthanks to her many familymembers and friends whocontributed.To Kirschbaum’s Bakery andCasey’s Market, both fromKirby’s hometown of WesternSprings, for their continuousfundraising efforts using cashjars. And to the people of thecommunity who fill them andhave helped to raise more than$600 to date this year, your“hometown girl” thanks youfrom the bottom of her littleheart. A special thanks goes out to theperson who took the time tocreate the very special origamifrom bills and placed them inCasey’s Market’s cash jar. TheWilsons have chosen to fund thedonation and start a collection!

Kirby’s Going Green!

Fundraising News

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We will no longer be issuing the June edition ofthe KirbyGram. But you can receive late-breakingnews and event updates via email while helpingThe Foundation to go green and save much-neededfunds at the same time. Please e-mail your name

and phone number to curekirby@sbcglobal.net to help us start a new, greener database of oursupporters. We will continue to mail the printversion of the December KirbyGram.

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Fundraising NewsAnd To The FamiliesWorking Together For The Cure . . .Ashleigh, Brooke, Anna andDave Kidwell would like tothank the IPA Foundation(Independent Pilots AssociationFoundation) in Louisville,Kentucky, for its generousdonation to The Children’sMedical Research Foundation.

Dave is an Airbus FO for UPSand an IPA member. Thecontribution is in honor ofdaughters Brooke and Ashleigh.The Foundation’s mission is“dedicated to providing for thewell-being of children and theirbasic needs with a focus onmaking life-changing differencesfor children with exceptionalmedical requirements.” TheChildren's Medical ResearchFoundation is grateful for IPA’scommitment and support inhelping us to achieve our goal of

a cure for Sanfilippo and makinga life-changing difference for asmall group of exceptionalchildren.To Judy Bible for her donationto The Foundation honoringBrooke and Ashleigh Kidwell’sbirthdays.To Vassallo Engineering &Surveying for its donationhonoring Hunter and SydneyMoff and to Drs. Glenn Bloisoand Margaret Crabtree fortheir donation in celebration ofHunter and Sydney’s mom,Theresa Moff.To Les and Teri Sheaffer fordonating in honor of theirdaughter, Brittany. And last but certainly not least, avery special shout-out to ChelseyMontgomery of Cedar Rapids,Iowa, for her thoughts on being asister to Lucas. “My reality isbrighter than your dreams.”Now that girl has an attitude!

News From Connecticut . .

A Note From Rhianna’s MomThank you seems like such alittle thing to say when our lifehas been blessed in such a bigway. After 17 years, to see thesewonderful donations sent onbehalf of Rhianna is truly ablessing. Our gratitude for thosewho continue to donate isinfinite, as is our gratefulness forthe steadfast commitment of theWilsons and the remarkable workof the researchers.

At the age of 20, each day mybeautiful child awakes tonumerous physical challengesand yet Rhianna always starts theday with a smile. She continuesto amaze us with herdetermination and her desire toparticipate and connect withthose around her. Rhianna putstremendous effort into using herswitch-activated voice outputdevice. Many days I can feel herpull the energy to raise thatpointer finger all the way fromthe other side of her body. She isalways so pleased to get aresponse back. She works just ashard to play the guitar with hermusic therapist. As the day goeson and her challenges wear herdown, she always manages tosave one last smile for her Dadwhen he arrives home fromwork. Our hope remains strongas the research moves forwardwith such great promise. Thankyou for giving us hope.

— Cynthia Logan

Anna and Dave Kidwell withBrooke and Ashleigh

Lucas, surrounded by sistersChelsey and Hailee

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The Bristol Auto Club revved upits support of The Foundation bydonating the proceeds of itsannual “Cruisin’ for Rhianna”Auto Show. We appreciate thegroup’s never-ending drive tofind a cure.

Our thanks to the Logans’ friendsTabitha and Justin Manafortfor again giving the proceeds ofthe Manafort Family Founda -tion’s annual golf outing to TheFoundation. The Logans arethankful for all the people likeTabitha and Justin who continueto think of Rhianna.

The Roberts family showed itsloyalty and faith in our mission ofa cure with yet another donationin honor of Rhianna through theClinton S. Roberts Foundation.

Family friends Donna and AlanTheriault and Rhianna’s grand -parents Martha and JimCouture celebrated her birthdaywith donations to TheFoundation.

Dennis and LaurelColgan of PictureFame again donatedfor “Rhianna and thekids.”

A donation honoringRhianna also wasreceived fromJohn St. Pierre ofSaints Restaurant.

Fundraising News

Rhianna communicating with Cynthia using heradaptive tech device.

Allison with sister Helen

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The Foundation would like to expressits deepest sympathy to Susan andLarry Kirch of LaCrosse, Wisconsin,

on the loss of their daughterAllison at the age of 17.

In Memory Of

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Have Fun With This Office“Fun” Raiser – Kirby Dares You!Here’s a fundraising idea thatcan be challenging and fun foreveryone in your office. Are youwilling to take a dare for Kirby?Here’s how it works. Yourcompany pledges a total amountit would be willing to donate toThe Foundation. Then eachemployee willing to take on adare chooses the dare and theamount to be donated if he orshe follows through. There canbe a list of suggested dares withdonation amounts, or you canleave it up to the employees toget creative and have some fun.Do a dance or perform a song onthe street, or for the office, wearheels for a day (that would be aguy thing), get a Mohawk, docartwheels down a hall, eat ordrink a mystery concoction….allfor fun and a great cause.

A Match For KirbyDoes your company have amatching gift program? It coulddouble your support of TheFoundation.

United Way Can Be ForKirby, TooDoes your company have UnitedWay pledges at your workplace?Although we are not a UnitedWay member, you can designateThe Children’s Medical ResearchFoundation as your recipient,and the funds will be forwardedto us through the United Way

Campaign! Simply give yourlocal United Way agency TheFoundation name, address andour Federal ID #36-4033667.

Give Kirby SecurityTired of taxes? The Founda -tion now has a brokerageaccount available that allows youto donate appreciated securities.Why pay tax on the gains whenyou can realize a charitablededuction of the full marketvalue of your stocks . . . and it’sfor Kirby, too! Contact SueWilson at (708) 784-0631 tolearn more.

Celebrate, And Make It For KirbyIs there a special birthdaycoming up for a family memberor friend? Are you looking foran alternative to the typical “overthe hill” gift? Be different. Inlieu of gifts, donate to TheChildren’s Medical ResearchFoundation. Kirby always lovesa party!

A Gift Like No OtherThis holiday season give clientsa donation to The Children’sMedical Research Foundation intheir names. It’s a gift that won’tgather dust and goes far beyondany other.

Go Kasual For KirbyTired of wearing those heels,hose or ties five days a week?Why not suggest a “Go Kasual

For Kirby Day” to youremployer? It’s a great way togive a “relaxing feel” to aworkday and raise funds for TheFoundation. Simply send amemo to co-workers explainingthe day and set the “fee” toparticipate.Still in school but want to help?How about a “Hat Day” donethe same way! It’s fun for thekids and a great way for them toparticipate in a good cause. No “fee,” just leave an amountup to them.

Fundraising Opportunities

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The 18th annual Sweetheart Dinner Dance will be held Friday, February 8, 2013, in theBallroom of The Ritz-Carlton Chicago.This elegant venue is the setting for The Foundation's celebration of its 18th year, which isfilled with hope that a breakthrough to a cure is now within reach.Executive Chef Mark Payne will serve a signature four-course dinner from his award-winningkitchen, following a champagne cocktail reception in the adjoining Loge.We will be treated to the magical sounds of the Michael Lerich Orchestra, which has entertained usfor the past 17 years! And silent auction packages promise to tempt sports, travel, dining, spa and shoppingenthusiasts.Reservations are $250 per person or $2,500 for a table of ten and must be made in advance. Invitations will bemailed in December, or you can reserve your place now online at www.curekirby.org. Please plan to join us bymarking your calendars now.

We need your help to make it a successThis dinner dance is the primary fundraising event of the year, and we’re asking you to help ensure its success. We have designated five sponsorship levels for the Sweetheart Dinner Dance, as listed below. In appreciation ofyour sponsorship, you will receive prominent event recognition. We ask that you indicate your wishes on thefollowing Reply Form and return it to The Foundation or visit us online at www.curekirby.org. Please contact Sue Wilson at (708) 784-0631 or curekirby@sbcglobal.net with any questions.

The Sweetheart Dinner DanceFebruary 8, 2013  • The Ritz-Carlton Chicago

An elegant setting at one of the world’s finest hotels

The 18th Annual Sweetheart Dinner Dance

~ SPONSORSHIP REPLY FORM ~

Sponsorship: r Diamond $10,000 r Silver $1,000r Platinum $5,000 r Sweetheart $500r Gold $3,000

Name as you want it to appear (Please print): ______________________________________________________

r Check Enclosed __________Please charge my (Check one): Visa/MC _____ American Express _____Cardholder Name (Please print): ________________________________________________________________Account Number _____________________________________________________________________________Expiration Date __________________ Signature _________________________________________________

Please include your phone number _______________________________________________________________Please return this form to: The Children’s Medical Research Foundation, Inc., P. O. Box 70,

Western Springs, IL 60558, fax to (708) 784-1978 or call (708) 784-0631.

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February 8, 2013

The Sweetheart Dinner DanceMakes a Romantic Holiday Gift

This holiday season, give your sweetheart a gift of good cheer – a romantic eveningat the Sweetheart Dinner Dance.

You’ll avoid last minute shopping in crowded stores when you call (708) 784-0631 now for reservations.

Then enjoy February 8th in taffeta and tux, sipping champagne, dining atThe Ritz-Carlton Chicago and dancing to the music of the Michael Lerich Orchestra. Cheers!

The Children’sMedical ResearchFoundation, Inc.®

P.O. Box 70Western Springs, IL 60558

KirbyGram

Copyright 2012 The Children’s Medical Research Foundation, Inc. All rights reserved.Reproduction prohibited without the express written consent of The Children’s Medical Research Foundation, Inc.

®

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