Crossroads Compiled

8/9/2019 Crossroads Compiled

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save the date!upcoming events

Crossroads

summer sendoff august 21

swing for spina bifidaseptember 16

memorial walk-and-roll-a-thon

september 19

fall family classicseptember 26

family holiday partydecember 4

summer & fa

The Story of UsProfiles of the people

who make SBAIL great

for more info: www.sbail.org/events
http://www.sbail.org/events.htmlhttp://www.sbail.org/events.htmlhttp://www.sbail.org/


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summer 2010 . crossroad

What is Spina Bifida?Spina Bifida is the failure of the spineto close properly during the first

month of pregnancy and results in varying degrees of paralysis, loss of sensation in the lower limbs, diffi-culty with bowel and bladder manage-ment, hydrocephalus, and learning disabilities. It takes a team of parents,doctors, therapists, teachers, andothers to help a person with Spina

Bifida achieve their maximum poten-tial.

What is the Spina Bifida Association of Illinois?The Spina Bifida Association of Illi-nois (SBAIL) is a non-profit organi-zation dedicated to improving thequality of life of people with SpinaBifida through direct services, infor-mation, referral, research, and publicawareness. SBAIL is a 501(c)(3) non-profit organization that was foundedin 1969.

Donate Now! Your support of the Spina Bifida Association of Illinois ensures that were ableto continue to pioneer programs that help meet the needs of more than 4,000people throughout Illinois and northwest Indiana. To make a donation, pleaseclick here.

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Internship OpportunitiesSBAIL is looking for creative, motivated interns for the 2010-2011 academic year. Interns will be responsible for duties such as:

- Copy Development: provide writing and editing support for event materials,appeals, news releases, thank you correspondence and website content- Web Communications : post and/or update items on the SBAIL website, Facebook page and Twitter account; monitor evolving web technologies that could assist the Association in improving outreach and communications- Data Entry: input information into spreadsheets or databases- Adminitrative Maintenance : make photocopies and scans; general officeorganization; prepare large mailings for distribution

Click here for more information.
https://www.givedirect.org/give/givefrm.asp?Action=GC&CID=101https://www.givedirect.org/give/givefrm.asp?Action=GC&CID=101http://www.sbail.org/internships.htmlhttp://www.sbail.org/internships.htmlhttps://www.givedirect.org/give/givefrm.asp?Action=GC&CID=101


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summer 2010 . crossroads

MessagesMessage from the President - 4

rom the Desk of the Executive Director - 5rogram Supervisors Section- 6What SBAIL Means to Me - 7

Updatesnternship Opportunities - 2olunteers Needed - 4pina Bifida Conference Announcement - 4

Updated Links & Forum Announcement - 5amp Independence Update - 6

Windy City Corvettes Raffle - 7

Event Announcementsummer Sendoff - 8wing for Spina Bifida - 8

3th Annual Memorial Walk-and-Roll-a-Thon - 9all Family Classic - 9

Profilescholarship Winners - 10-11im Thibeau - 12

Kathy Peronti - 12usie Schreiber - 13

ames Fuller - 13ami Gryll - 14

Melissa Davis - 14inda Faust - 15

From the ArchivesWhat the Holiday Party Means to Me,by Linda Faust from Crossroads-Winter 2007 - 16-17

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Edition Highlights

James Fullers Bracelet

Campaign, page 13Profiles begin on page 10

Linda Faust Reflectson the Holiday Party,

Begins on page 15

SBAIL AnnouncesFall Walks, page 9

Announcements begin on page 8

Table of Contents


4/18

summer 2010 . crossroa

Letter from the PresidentMark Bernstein

It is hard to believe that summer is almost over. The end of

summer marks another season in which young people with SpinaBifida enjoyed a successful and enriching overnight summer camp

experience with the support of SBAILthis year at the YMCAsCamp Independence. But SBAIL is about much more than

summer camp.

For SBAIL, the work continues year round. SBAIL, for example,provides support to Anixter Village in Chicago, the only housing dedicated to support the transition of adults with Spina Bifida to

independent living in the community. Through this program,SBAIL will work to develop a blue print for a program that can beused elsewhere that will foster a transition to independent living

for those with Spina Bifida. This of course is only one of theprograms offered by SBAIL. For more information, please check

our website at www.sbail.org.

We also continue to expand our reach and seek new partners,participants and supporters. We have expanded and diversified the

Board by adding new members that have professional and personalbackgrounds that will help us to continue to try to reach all thosein Illinois affected by Spina Bifida. With the current budget short-

falls that are facing federal, state and local government agencies,organizations like ours have become even more important in providing services and resources to those who are not served or areunderserved by existing programs and agencies. If you are inter-ested in getting involved with the work of our organization, pleasecontact us as there are always opportunities and a need for volun-teers. Even if you cannot volunteer, we welcome your support in

whatever form you can provide it. Regardless, we encourage you touse SBAIL as a resource to assist those affected by Spina Bifida.

We look forward to seeing and hearing from you. In the future, we

plan to communicate, as much as possible, by e-mail so pleaseforward e-mail addresses to us of anyone that you know of who

would like to, but is not, receiving SBAIL communications so wecan stay in touch.

VolunteersNeeded!

SBAIL needs volunteersto help in a variety of

ways. All of our volunteeropportunities are in-office and anyone who

feels they can help SBAILis welcome to contact

Chris Byrne [email protected] or callthe office at (773) 444-0305. Aside from gen-eral office help, we are

offering opportunities inPublic Relations, Mar-

keting, IT, and Fundrais-ing. We also have oppor-tunities to help plan andorganize special events.

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Spina BifidaConferenceThe University of Wis-consin School of Medi-cine and Public Health

is hosting a Spina BifidaConference on Satur-

day, October 2, 2010 atthe Health Sciences

Learning Center (750Highland Avenue,

Madison, WI).

For more information,contact Anna Chapmanat (608) 263-9585 or

[email protected]


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From the Desk of the Executive DirectorAmy Maggio

Its hard to believe its already August and the start of school is just around the corner! Its beebusy spring and summer at SBAIL. Summer 2010 marked the opening of Camp Independence and mankids enjoyed sun-filled days at camp making memories that will last a lifetime. Our experience and panership with the Y of Metropolitan Chicago and Dr. David McLone and the healthcare staff at ChildrenMemorial Hospital has enabled over 150 individuals to attend Camp Independence this summer. Andduring all the sessions at Camp Independence, campers participated in a daily Independent Skill program that was designed by the staff at Loyola University. The Independent Skill program was starteCamp Ability and is now part of Camp Independences program. This project is an on-going researc

project that has followed individual campers for many summers. This type of research is critical in undestanding Spina Bifida, its impact on the learning process and provides us with valuable information ffuture programs and services.

In May, Jami Gryll joined the staff of SBAIL as the new program director at Anixter Village, residency for adults with Spina Bifida located in Chicago. Prior to joining the staff at SBAIL, Jami wthe child life specialist at Shriners Hospital in Chicago. Jami will be working closely with our SB tfrom Childrens Memorial Hospital, the Rehabilitation Center of Chicago and Loyola University to provide a comprehensive life-skills and transition program for our adults with Spina Bifida.

We would also like to welcome new members to the SBAIL Board of Directors. Aimee Look, unteer Resources Manager at the Rehabilitation Center of Chicago, Kathy Zebracki, PhD, LicensClinical Psychologist at Shriners Hospital in Chicago, and Daniel Hill, Research Associate-GlobalWilliam Blair and Company. The board and the staff of SBAIL continue to plan events to raise funds aawareness about SB and to support our many programs. Many of you joined us for events we hosted elier in the year, we have many more events planned for this fall: Summer Sendoff, Swing for Spina Bifgolf outing, Central Illinois Memorial Walk-and-Roll-a-Thon, and Fall Family Classic picnic & walk.Please check our website and event section for more information at: www.sbail.org.

And to all of you, my heartfelt thanks for your continued support of the Spina Bifida Associatiof Illinois! Without your donations and volunteer time, we would not be able to provide scholarshipemergency funds and programs to our families affected by Spina Bifida throughout the state!

Updated Links and Forum PageSBAIL( www.sbail.org ) is proud to present its updated and expanded links page, now offering more

resources and more current information. Please visit our links page at www.sbail.org/links.html.

SBAIL is also revealing its new and improved online forum where friends of SBAIL can easily commnicate and network with one another and SBAIL on a variety of topics from medical care concerns t

health and fitness. Please visit our Forum at www.sbail.org/forums. 5
http://www.sbail.org/http://www.sbail.org/http://www.sbail.org/http://www.sbail.org/links.htmlhttp://www.sbail.org/links.htmlhttp://www.sbail.org/links.htmlhttp://www.sbail.org/forumshttp://www.sbail.org/forumshttp://www.sbail.org/forumshttp://www.sbail.org/forumshttp://www.sbail.org/links.htmlhttp://www.sbail.org/


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Program Supervisors Section Jami Gryll

It has been a great few months as the new Program Supervisor at Anixter Village. I have thoroughly enjoyed working with all of the

tenants at Anixter Village and being a part of the Spina Bifida Association of Illinois team!

Over the past couple months at Anixter Village the tenants haveenjoyed, the fourth of July picnic, cooking workshops, and weekly

fitness sessions.

I am excited to report that we will be introducing a new program forthe tenants at Anixter Village to partake in! The ultimate goal of

this program is to assist adults with Spina Bifida in their transitionto lead an independent and quality life. This program at Anixter Village will provide the tenants with opportunities to acquire theskills necessary to live independently. Tenants will be encouragedand guided to reflect on their past and current life experiences in

all different life domains, such as, vocational/educational,

social/recreation, etc. With the help of the Program Supervisor,tenants will then be able to identify goals they have in each life

domain to achieve the ultimate goal of independence. Forexample, a tenant may be interested in obtaining a job based on

past volunteering experiences.

Setting goals and working towards achieving them can be an over- whelming task. As Program Supervisor, I will be assisting tenants in

breaking down their goals into small steps to make the goal more

attainable. Tenants will be rewarded for their efforts in achieving their goals with incentives they will choose, such as, gift certificates

to Peapod.com, Subway, etc.

We will kick-off this new program at a tenant retreat at CampIndependence the weekend of September 24th September 26th!I am looking forward to this exciting weekend and the beginning of this new program! I know in the months to come, we will see great

progress and success from the tenants at Anixter Village.

CampIndependence

This summer, the YMCA

and SBAIL formed an alli-ance allowing the YMCA to

host Camp Ability, now called Camp Independence.

The first summer of thisprogram was a big success.Kids and parents loved thenew facilities and several

parents reported that their

children had a blast at CampIndependence. A specialthanks to the YMCA and Dr.

McLone for organizing Camp Independence.

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8/18


ummer Sendoff urkin's Bar (map)aturday, August 21, 2010:00pm to 5:00pm

ome join SBAIL and Durkin's Bar in Lincoln Park for SBAILs Summer Send-ff. For four hours, we will be hosting a block party-themed event with music anaffle prizes.

ickets include two lamb roasts, appetizers, Bud Light and Goose Island 312raughts, Three Olives Vodka Lemonades, and four hours of socialization andntertainment.

Swing for Spina BifiStonewall Orchard Golf Club (mThursday, September 16, 20

12:00pm to 8:00p

This year, Swing for Spina Bifida will be hosted at Stonewall Orchard Golf Cin Grayslake, Illinois. Stonewall Orchard Golf Clubs course was designed

Arthur Hills, the worlds number 2 golf course designer, and was selected to hthe Illinois PGA Section Championsh

Register as an individual golfer or put together a foursom

Registration includes a full round of golf and golf cart rental, lunch, dinner, beverages, and participation in the evenings raffles and silent auctions. Only 1

spots available, so register to

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http://maps.google.com/maps?f=q&source=s_q&hl=en&geocode=&q=801+West+Diversey+Parkway,+Chicago,+IL&sll=37.0625,-95.677068&sspn=26.4545,48.164063&ie=UTF8&hq=&hnear=801+W+Diversey+Pkwy,+Chicago,+Cook,+Illinois+60614&ll=41.935966,-87.64914&spn=0.012099,0.023518&z=15&iwloc=Ahttp://maps.google.com/maps?f=q&source=s_q&hl=en&geocode=&q=801+West+Diversey+Parkway,+Chicago,+IL&sll=37.0625,-95.677068&sspn=26.4545,48.164063&ie=UTF8&hq=&hnear=801+W+Diversey+Pkwy,+Chicago,+Cook,+Illinois+60614&ll=41.935966,-87.64914&spn=0.012099,0.023518&z=15&iwloc=Ahttp://maps.google.com/maps?f=q&source=s_q&hl=en&geocode=&q=801+West+Diversey+Parkway,+Chicago,+IL&sll=37.0625,-95.677068&sspn=26.4545,48.164063&ie=UTF8&hq=&hnear=801+W+Diversey+Pkwy,+Chicago,+Cook,+Illinois+60614&ll=41.935966,-87.64914&spn=0.012099,0.023518&z=15&iwloc=Ahttp://www.bar1events.com/index.php?BarID=3http://www.bar1events.com/index.php?BarID=3http://maps.google.com/maps?oe=utf-8&client=firefox-a&ie=UTF8&q=stonewall+orchard+golf+club&fb=1&gl=us&hq=stonewall+orchard+golf+club&hnear=Chicago,+IL&cid=0,0,13669415713994184925&ei=QcZhTP_4GZG-8wSNsOC_Cw&ved=0CCAQnwIwAQ&ll=42.321525,-88.13859&spn=0.007266,0.013797&z=16&iwloc=Ahttp://maps.google.com/maps?oe=utf-8&client=firefox-a&ie=UTF8&q=stonewall+orchard+golf+club&fb=1&gl=us&hq=stonewall+orchard+golf+club&hnear=Chicago,+IL&cid=0,0,13669415713994184925&ei=QcZhTP_4GZG-8wSNsOC_Cw&ved=0CCAQnwIwAQ&ll=42.321525,-88.13859&spn=0.007266,0.013797&z=16&iwloc=Ahttp://maps.google.com/maps?oe=utf-8&client=firefox-a&ie=UTF8&q=stonewall+orchard+golf+club&fb=1&gl=us&hq=stonewall+orchard+golf+club&hnear=Chicago,+IL&cid=0,0,13669415713994184925&ei=QcZhTP_4GZG-8wSNsOC_Cw&ved=0CCAQnwIwAQ&ll=42.321525,-88.13859&spn=0.007266,0.013797&z=16&iwloc=Ahttp://www.stonewallorchard.com/index.asphttp://www.stonewallorchard.com/index.asphttp://www.stonewallorchard.com/index.asphttp://maps.google.com/maps?oe=utf-8&client=firefox-a&ie=UTF8&q=stonewall+orchard+golf+club&fb=1&gl=us&hq=stonewall+orchard+golf+club&hnear=Chicago,+IL&cid=0,0,13669415713994184925&ei=QcZhTP_4GZG-8wSNsOC_Cw&ved=0CCAQnwIwAQ&ll=42.321525,-88.13859&spn=0.007266,0.013797&z=16&iwloc=Ahttp://www.bar1events.com/index.php?BarID=3http://maps.google.com/maps?f=q&source=s_q&hl=en&geocode=&q=801+West+Diversey+Parkway,+Chicago,+IL&sll=37.0625,-95.677068&sspn=26.4545,48.164063&ie=UTF8&hq=&hnear=801+W+Diversey+Pkwy,+Chicago,+Cook,+Illinois+60614&ll=41.935966,-87.64914&spn=0.012099,0.023518&z=15&iwloc=Ahttp://www.sbail.org/golf.htmlhttp://www.sbail.org/golf.htmlhttp://www.sbail.org/summersendoff.html


9/18

summer 2010 . crossroaBloomington Memorial Walk

ipton Park (map)unday, September 19, 20101:00am

his fall, SBAIL is hosting the 13th annual 5K Memorial Walk-and-Roll-a-Thon toonor the lives of Emma Kenny, Shannon Kolodzieski, Kaylin Rood, and Sarah Whid. The walk begins at noon and a picnic in the park for walk participants will follow

Walk participants are invited to earn pledges. Registration for a family of four is typially $50, but families earning $50 or more in pledges are admitted to the walk and

ollowing picnic for free and receive an event tee-shirt at no additional cost. Specialrizes, such as local restaurant gift cards or iHome iPod speakers, will be given to thowho raise over $100 or $500 in pledges.

Fall Family ClaThe Center (m

Sunday, September 26, 2011:30

SBAIL is excited host the second annual Fall Family Classic. The afternoon will b with a walk-and-roll-a-thon around The Center. Following the walk, there will be

amily picnic and time to enjoy The Centers grounds, visit the petting zoo, and go ohayr

Fall Family Classic participants are invited to earn pledges. As in the Bloomington Mmorial Walk-and-Roll-a-Thon, registration for a family of four is typically $50, b

families earning $50 or more in pledges are admitted to the walk and following picfor free and receive an event tee-shirt at no additional cost. Families raising over $5

in pledges will win their choice of iHome iPod speakers or a digital cam9
http://maps.google.com/maps?q=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&oe=utf-8&client=firefox-a&ie=UTF8&hl=en&cd=1&geocode=FfcFagIdGOmy-g&split=0&hq=&hnear=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&source=embed&ll=40.502775,-88.938216&spn=0.03211,0.047035&z=14http://maps.google.com/maps?q=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&oe=utf-8&client=firefox-a&ie=UTF8&hl=en&cd=1&geocode=FfcFagIdGOmy-g&split=0&hq=&hnear=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&source=embed&ll=40.502775,-88.938216&spn=0.03211,0.047035&z=14http://maps.google.com/maps?q=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&oe=utf-8&client=firefox-a&ie=UTF8&hl=en&cd=1&geocode=FfcFagIdGOmy-g&split=0&hq=&hnear=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&source=embed&ll=40.502775,-88.938216&spn=0.03211,0.047035&z=14http://maps.google.com/maps?q=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&oe=utf-8&client=firefox-a&ie=UTF8&hl=en&cd=1&geocode=FfcFagIdGOmy-g&split=0&hq=&hnear=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&source=embed&ll=40.502775,-88.938216&spn=0.03211,0.047035&z=14http://www.sbail.org/family-classic.htmlhttp://maps.google.com/maps?q=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&oe=utf-8&client=firefox-a&ie=UTF8&hl=en&cd=1&geocode=FfcFagIdGOmy-g&split=0&hq=&hnear=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&source=embed&ll=40.502775,-88.938216&spn=0.03211,0.047035&z=14http://maps.google.com/maps?q=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&oe=utf-8&client=firefox-a&ie=UTF8&hl=en&cd=1&geocode=FfcFagIdGOmy-g&split=0&hq=&hnear=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&source=embed&ll=40.502775,-88.938216&spn=0.03211,0.047035&z=14http://www.sbail.org/bloomington-walk.html


10/18


Patrick Juris, Valiant Scholarship WinnerPatrick Juris of New Lenox, IL is a senior year at the University of Illinoi

Chicago and is majoring in sociology. He plans on to continue his educatiotowards a career as an occupational therapist. At UIC he serves as the Vice Prdent of the Sociology Club and is currently working with a member of the soology department on a research project involving Chicagoland farmer's ma

Jennifer Bradtke, Scholarship WinnerJennifer Bradtke grew up and currently lives in Bloomington, Illinois.She is a sophomore at Illinois State University, majoring in Special Edu-cation, Learning and Behavior. She wants to teach Special Education tochildren in Early Childhood Education and looks forward to reaching that goal each and every day. She loves to hang out with friends, go forwalks, and travel. She wants to thank SBAIL for being such a greatresource for her throughout her life.

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kets. Patrick says that SBAIL has helped him get where he is today and has been helpful in foing his social and academic growth by helping him forge friendships with others with SpBifida through my attendance at SBAIL events. Receiving a scholarship has helped him ctinue to work towards his goals.

Jenny Nilsen, Scholarship WinnerJenny Nilsen from Lake Zurich, IL, is a senior Psychology Major and Sociology minor at BraUniversity, where she has been a Resident Advisor (RA) for three years. After graduating fBradley University, she will continue her education in Grad School to pursue a career in Mariage and Family Therapy. The Spina Bifida Association of Illinois has made it possible Jenny to pursue a quality education in order to follow her dream of becoming a Marriage anFamily Therapist.

Kendall Gretsch, Scholarship Winner A freshman in college at Washington University in St. Louis, Kendall Gretsof Downers Grove, IL, plans to major in biomedical engineering on her way becoming a biomedical engineer. For Kendall and her family, SBAIL ismuch-appreciated source of support and information that is now helpingfinance her college education.


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summer 2010 . crossroads

Scott Nyquist, Scholarship WinnerScott is a senior at Elmhurst College from Prospect Heights, IL. He is Majoring in Special Education and minoring in history and hopes one day to become a

special education teacher. He has experience student teaching at the ElmhurstLife Skills Academy and is able to give his professors and fellow students a first-hand education about Spina Bifida. Scott is also a member of the Council for

Guadalupe Solorio, Scholarship WinnerA freshman in college from Hazel Crest, IL, Guadalupe will be starting at a community college

close to home for medical reasons, but hopes to transfer to a university after having her thirdkidney transplant. Guadalupe aspires to become an elementary school teacher. To her, SBAILis an association that helps many people with Spina Bifida by working together to accomplishgreat things.

Exceptional Children and Amnesty International. To him, SBAIL is an association that hasprovided him with a tremendous amount of support over the past four years.

Bridget Evans, Scholarship WinnerBridget Evans of Orland Park, IL, is a senior at the University of Illinois atUrbana-Champaign. She is majoring in Community Health and concentrat-ing in Health Planning and Administration. This summer, she interned at ahospital in downtown Chicago and it further solidified her desire to work inhospital administration to help provide people with equally good, if notbetter, hospital experiences than shes had. Bridget volunteers at the MidAm-erica Service Dog Foundation and has trained over 15 dogs for other people with disabilities.For her, SBAIL is a source of comfort. She is comfortable pursuing her dreams knowing thatsupport is nearby if she should need it.

Elizabeth Conroy, Scholarship WinnerElizabeth Conroy of Geneva, IL, is working on her Masters of Speech and Lan-guage Degree from St. Ambrose University in Davenport, IA. Elizabeth com-

pleted her Bachelors Degree in Elementary Education and looks forward tofurthering her education. She aspires to become a Speech and LanguagePathologist. For Elizabeth, SBAIL is beneficial because they encouraged herand helped her follow and achieve her dreams. SBAILs scholarships have made

t possible for her to receive her Bachelors Degree and pursue her Masters Degree

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12/18


Meet Tim Thibeau, Event Committee MemberTim Thibeau boasts some pretty unbelievable pee-wee football stats

But his involvement with SBAIL is truly extraordinary.Tim, however, puts his involvement in much more modest terms. My

involvement is evolving. He started out helping SBAIL in small ways, donaing when he could, attending all the events he could because his cousin, Mark

Meet Kathy Peronti, Benefit OrganizerFrom just the sound of her voice, you can get the impression that Kathy Peronti is a fast-paced,

ood-humored woman. From her actions, you can tell she has a big heart. Ten years ago, two of herousins approached her with an idea about raising money for Spina Bifida, which Kathys 17-year-oldaughter, Julianne, was born with. Since then, Kathy has been the sole organizer of the OMalley Ben-

NI BowlThe 2010 Chicago-

land Bowl-a-Thonwas the first annual

bowl-a-thon inNorthern Illinois.Many friends of SBAIL packed the

lanes in support of SBAIL, raising over$7500. Because of its

uccess, the Chicago-and Bowl-a-Thon isnow becoming anannual event andthey hope to have

double the attendeesand to raise twice as

much money for next years event.

[Organizithe benefitnever as mwork as pe

think it is

fit, a bar and karaoke night at Chicagos Emerald Isle Bar .But Kathy doesnt want to take all the credit for the event, which raises

lmost $13,000 a year for SBAIL. She cites a huge amount of family support,specially from her brothers and sisters. But she also takes care to mention that

while she has a routine set up, its never as much work as people think it is.But mostly, she says the event is such a success because shes got a lot of

amily and friends who like to drink. The casual, come-as-you-are gathering of er family and old friends as well as great raffle prizes and karaoke stand is some-

hing Kathy believes is why people keep coming back. You see people you mightnly see once a year, you have a great time and youre there for a great cause.

Bernstein, has a daughter with Spina Bifida. But in the past year, his involve-ment with SBAIL has really skyrocketed.

He was the Committee Chair of the 2010 Chicagoland Bowl-a-Thon and will be the Committee Chair for the 2011 Chicagoland Bowl-a-Thon and isserving on the committee for the 2010 Fall Family Classic and he enjoys working with SBAIL. Its just a good group of people. They have good energy; theyinclusive, warm, and inviting.

But Tim says one of the biggest reasons he keeps becoming more involveis because of one moment at the 2010 Chicagoland Bowl-a-Thon when helooked around at a nearly full bowling alley of people who supporting SBAIand realized that the work he was doing really was making an impact on thosaffected by Spina Bifida. The more and more I get involved, the more andmore I feel like Im making a contribution, the more and more I feel like its theright thing to do.

A word of advice to those thinking of attending: Bring your singing and dancing skills-if you haveny, warns Kathy.

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13/18

summer 2010 . crossroaSusie Schreiber: PR for Prevention

Susie Schreiber was stuck in a routine of waking up,going to work, going home, and going to bed only to wakeup and do it all over again the next day. She was happy, butshe felt a need to do something else, to feel like she was

CrimsonLounge

When SBAIL panered with ZapwaCommunications

SBAIL became tbeneficiaries of aevent Zapwater w

hosting at the Crimson Lounge, anupscale Chicag

nightclub locatedthe Hotel Sax . It SBAILs first eve

targeted at younprofessionals & wsuccessful that SBis continuing to h

similar events.

Meet James Fuller, Awareness AdvocateAt only sixteen, James Fuller shows a lot of initiative. A pitcher for his high

chool baseball teama skill hes been honing all his lifeand a golfer on hischools team, James created a campaign to spread awareness of Spina Bifida. Heas Spina Bifida, but his mother, Joanne, says that partly because of this cam-aign, James is able to accept that Spina Bifida is part of who he is.

James came up with the idea for his campaign completely on his own. Heound a website where you can customize and order bracelets (similar toivestrong bracelets) and designed a yellow bracelet that says spina bifida and

James is very proud of the

bracelets, it makeshim feel good... I think it helps himaccept his Spina

Bifida

ordered four, just enough for his family. But his family was impressed with the idea and ordered 100 more and James sent those bracelets out to family and friends allover the country. Now, James distributes his bracelets toteammates, doctors, and specialists. James even gave oneto his orthotist. The next time he went back, the ortho-tist told James that he had given his bracelet to anotherof his patients with Spina Bifida who saw the bracelet andloved it.

His mother said that shes noticed a change in Jamess attitude since he starting distributing the brace-

ets. James is very proud of the bracelets, it makes him feel good I think it helps him accept his SBifida and the more he accepts that Spina Bifida is part of him, the better.

Top: The Fuller FamilBottom: James pitchin

contributing something.Then, things fell into place. And quickly. Susies boss at

Zapwater Communications met Peter Billmeyer, a member of SBAILs Board of Directors, and Dave told Susie about SBAIL.Susie jumped at the opportunity to get involved despite nothaving any connection with SBAIL.

Susie worked some magic and, within days,Zapwater invited SBAIL to behe benefiting organization at an event they had planned at th e Crimson Lounge . ince that event, Susie has only gotten more involved and more passionate abouter volunteer work for SBAIL. She is involved in the planning of the Summerendoff event and sends out media releases that get SBAIL events attention in veryopular Chicago-area publications like Red Eye and Chicago Social. She has comeo learn that the most important thing she can do while contributing to SBAILvents for young professionals is stress that Spina Bifida can be prevented, a simpledea that has the potential to change a familys lives forever.
http://www.crimsonchicago.com/http://www.crimsonchicago.com/http://www.zapwater.com/http://www.zapwater.com/http://maps.google.com/maps?q=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&oe=utf-8&client=firefox-a&ie=UTF8&hl=en&cd=1&geocode=FfcFagIdGOmy-g&split=0&hq=&hnear=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&source=embed&ll=40.502775,-88.938216&spn=0.03211,0.047035&z=14http://www.crimsonchicago.com/http://www.crimsonchicago.com/http://www.crimsonchicago.com/http://www.crimsonchicago.com/http://www.zapwater.com/http://maps.google.com/maps?q=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&oe=utf-8&client=firefox-a&ie=UTF8&hl=en&cd=1&geocode=FfcFagIdGOmy-g&split=0&hq=&hnear=2410+General+Electric+Rd,+Bloomington,+McLean,+Illinois+61704&source=embed&ll=40.502775,-88.938216&spn=0.03211,0.047035&z=14http://www.crimsonchicago.com/


14/18

summer 2010 . crossroaMeet Jami Gryll, Program Supervisor

Jami Gryll was first introduced to Spina Bifida through afamily friend, Eric, who has Spina Bifida. During her six years asa Certified Child Life Specialist at Shriners Hospital for Chil-dren in Chicago, though, is when she really began to learn

about and understand Spina Bifida.In the spring of 2010 when she was at Shriners, Jami heard about a jobas Program Supervisor at Anixter Village. The job excited me, I was ready for anew challenge, she said as she sprang up in her chair and a smile broke acrossher face.

At Shriners, Jami worked with patients with Spina Bifida in the hospitaland saw them grow, but she knew their journeys didnt end there. I knew therewas so much they can do outside the hospital, too. Thats why this job is soimportant... I just see so much potential in all of the tenants.

Jami is still in the process of building her relationships with the residentsat Anixter, but is already helping the tenants set long-term goals and that seemattainable to them. My favorite part of this job is seeing any little bit of prog-ress that the tenants make You know, its really about providing them with theresources and narrowing in on their goals, but the tenants are helping them-selves move forward.

Meet Melissa Davis, Anixter ResidentMelissa Davis and her husband Marlon Davis were so excited to get to

Anixter Village that they jumped the gun by about a decade.Ten years ago, Melissa read a newspaper article that a handicap acces-sible apartment complex was being built in the Illinois Medical District andthat the building was being considered for individuals with Spina Bifida. Me-lissa got on the phone right away to try and secure an apartment in the com-plex. She got told that the building was just an idea.

In the meantime, Melissa and Marlon continued to look for an apart-ment so they could move out of their parents houses and get married. Soon,they settled on a cramped apartment that their paratransit driver recom-

mended.

Anixter Village

Anixter Village (soto be renamed) w

started in 2006 aspart of SBAILseffort to enhance i young adult pro-

gramming. Designto give young adu with Spina Bifida

way to adjust toindependent living

Anixter Village is only building of ikind in the worldand is completel

handicap accessib

14

Anixter is great for anything

geared towards people with dis-

abilities

When Anixter Village finally opened, though, Melissa and Marlon tragain to get an apartment there. But this time, they were successful. Althouthey lived independently before, the programming at Anixter Village has reprovided Melissa and Marlon with support they want, like help finding job leand has given them an opportunity to live in a handicap accessible unit, somthing they hope to find when they leave Anixter since living at Anixter is so msmoother than their other, semi-accessible apartment. My favorite part aboliving here is the accessibility, the spaciousness and openness of the apartmen Anixter is great with anything geared towards people with disabilities.


15/18


Linda Faust, Holiday Party Planner & ParentLinda Faust smiled throughout the entire interview. And not a polite

smile, either. She smiled the kind of smile where a persons eyes sparkle ancrinkle and her smiles so wide you can see her molars and her face looks li

its going to crack from trying to contain so much joy. The genuine kind osmile.After our first Holiday Party, we were hooked. Your whole life with

child with Spina Bifida is struggling and fighting, fighting to get insurance coerage, fighting to get extra help from schools. But at the Holiday Party, we jugot things for nothing. It was very healing and recharging.

Years ago, Linda contacted the previous organizer of SBAILs HolidParty offering to donate a few gift baskets from her business. The organizer haa lot on her plate and asked Linda if shed be able to help with any of the plan

ning. Within a couple years, Linda was largely responsible for the planning event. Walking into her first Holiday Party, she felt that her family was alon

Her son, Jeffrey (who has Spina Bifida), didnt know any other kids with SpiBifida and her family didnt know any other families who really understohow many challenges Spina Bifida presents. But the Holiday Party has givthem a chance to feel part of something larger, to feel as if they are aroun

HolidayParty

The Holiday Party isa winter favorite for

the families of SBAIL. Held eachear in December, allhildren will receive a

gift and have theopportunity to visit

Santa. The 2010Holiday Party will be

on December 4 atthe John G. Coyersearning Academy in

Rolling Meadows. Beon the lookout forinformation in the

mail!

15

people who understand them better than anyone else possibly could.Its also given her an opportunity to give all of her kids the best holidays

possible. Her older daughters have helped her shop for the event in the past,which makes them feel involved. But the best part was that the Holiday Partygave gifts to all of her kids. My kids got so many things that I wouldnt havebeen able to give them on my own. She told a story about one year when hedaughter Laura was obsessed with Pixie Stix and Holiday Party workers told hershe could take as many as she wanted. Laura was just so overjoyed. It was justPixie Stix, but the smile on her face... Oh, she was just so excited. She was on a

After our firHoliday Party,were hooked.was very healand rechargin

sugar high for months!

I keep [organizing the event] because it meant so much to me and I know it means so much to

other people If I can give other people that same feeling, its a good gift to give. [And] I cant let goof organizing the event. I have to make sure [the partys] always there and does whats supposed to do


16/18


From the Archives:What the Holiday Party Means to Me by Linda Fau

It is late and I am sitting here totally exhausted. I look around me and seemountains of gifts, remnants of wrapping paper, boxes of donations, suppliesand various piles of things I do not even recognize anymore. It is the end of justone of the days my family and I spend preparing for the ISBA Holiday Party. Assit here many thoughts run through my head like, where are my scissors? anhow will I climb out of here?, but there are others I would like to share.Sometimes during the stressful moments of running this party I wonder why I

From theArchivesThis article was

written by LindaFaust for the

Winter 2007edition of Crossroads.

ver volunteered to do this. At times like this moment however, the answer is very clear. My mind and bodre exhausted but my heart is full. There is a warm smile on my face as I relive parts of this day and memoies of previous holiday parties.

I remember the first one my family ever attended. It was back in the day when the great Shei

Kniskern and her wonderful family and committee were in charge. My son Jeffrey, who has Spina Bifidawas 6 years old. Things were very hard on us since he was born and we had spent those first 6 years grievinighting for him to be healthy and get medical care while trying to learn and understand all the various

medical problems he had and how to deal with them. We were on the brink of bankruptcy most of the timerecall a time when I had to offer the woman at the hospital $10 or my coat as she was refusing to let m-year-old son get his MRI because we still owed them money. My older daughters missed out on a lot o

We had the of our livessetting was

fortable & wmade to feel

welcome

my attention, special things, and school because we had to travel so much foreffs care. Jeff himself was having problems dealing with his condition. He washe only one we knew with Spina Bifida. He was feeling alone and I thought it was

ime that I take him to an ISBA event so he could meet other children like him-elf.

Although we were aware of the organization we had never been to an eventefore. They were kind of far away for us but when the invitation for the holidayarty arrived I decided this time we should go. Even though we didnt know nyone or really socialize much we had the time of our lives. The setting wasomfortable and we were made to feel very welcome. It felt good to be somewhere where you didnt havo answer questions about your child, suffer stares from people or be different from everyone else. Youwere surrounded by people who understood you on a level that even your friends and family couldnt

There were treats, food, and things to do for the kids, all just given to you. It was a whole day of fun thayou could finally afford to do because it was free. I was surprised and delighted that even my daughteeceived gifts. That made them feel special too because for once it was not just Jeff who was getting specreatment. We emerged from this party happy, healed, strengthened and carrying bags of things we did not

have to fight and struggle for. We had hope in our hearts and we knew we werent alone anymore. We hadomething to look forward to, next years party. There was a change in us and it was all because of thvent. It was magical.

After that experience things improved for us. We still struggled, had bad times and setbacks, butvery time that party rolled around our spirits were lifted, our strength renewed. We made new friends,

earned some valuable information, and made many wonderful memories. I recall with a chuckle the part16


17/18


From the Archives:Continued

we refer to as the pixie stick party. My daughter Laura was really into candy pixie sticks and it just sohappened that that year at the end of the holiday party they were giving out pixie sticks. As we were exit-ing there was a giant box of them and we were told to take as many as we wanted. Needless to say for Laurathis was like winning the lottery. I can still picture the look on her face. She was in sugar heaven forweeks. There was also the time Jeff won a basket full of beanie babies in the Spina Bifida raffle. He

[Jeffreys stuffed dog, Christmas,]was his special friend at scaryhospital stays

This event isclose to our he

and means thworld to us. W

it as a huge TYou

wanted them so badly and that was one of the best moments for him. He alsorecalls the very first gift he opened at our first party. It was a stuffed dog thathe named Christmas. It meant the world to him and was his special friend atscary hospital stays.

Then there was the first time we were helping with the party. My twodaughters, Michelle and Laura, and I had volunteered to do the shopping and wrapping of the gifts, along with other things. Off we went to Wal-Martready to power shop. The manager knew of our mission and had people on

hand to assist us. As we would fill a cart with gifts that we chose specially for each child one of us wouldbring it to the front and get another empty one. We were having so much fun. It was like being on a gameshow or a shopping spree. We had so many toys that they were still checking us out as the store was clos-ing. Then came the moment when we had to get all the gifts into my mini van and get them home. Inever dreamed I wouldnt have enough room for them. We ended up filling the van from floor to ceil-ing. My daughters had to share the passenger seat with their feet up on the dashboard as even the floorbeneath them was stuffed. The manager was laughing at the sight of us. The side door couldnt quiteclose all the way so every time I turned a corner the light inside the van would go on and off and various

talking toys would be activated. We were laughing so hard and hoping wewould not get pulled over by the police. When we go shopping now we alwaysbring an extra vehicle or two. We also bring many helpers, some who playwith the toys a little too much, but really enjoy picking them out for the chil-dren.

Now I am the holiday party chairperson and in charge of organizing it.It is a lot of work but we truly enjoy doing it because this event is so close toour hearts and means the world to us. We do it as a huge Thank You to mypredecessors and the ISBA for all the wonderful parties, peace and hope they

gave us. It is a labor of love for my family and me. I sit here trying to find the strength to get up and goto bed. I am hoping the children like their gifts, praying I havent forgot something important and thatthe party turns out okay. I want to give that uplifting, magical experience to others. Every time I do it isanother gift for me.

To all the people involved with helping me be able to give this party I want to say Thank You fromevery part of my heart because I could not do it without you. To all who attend I truly hope it gives you

and your family as much as it has given me and mine.17


18/18

Crossroads

Spina Bifida Association of Illinois8765 West Higgins Road, Suite 403

Chicago, Illinois 60631Phone: 773.444.0305

Fax: 773.444.0327http://www.sbail.org

summer & fal
http://www.sbail.org/http://www.sbail.org/http://www.sbail.org/

Documents

Crossroads Compiled