Crossroadswinter & spring 2012

Coming UpJoin us for SBAIL’s

spring eventsBegins on page 8

ProfilesMeet the

O’Keefe FamilyBegins on page 13

Be PreparedUpcoming changes

in health careBegins on page 9

Highlights

Toys and TimeA look at what our new

volunteers graciously give

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For more information on anything seen in this edition of Crossroads, please contact the SBAIL office at:

(773) 444-0305or

sbail@sbail.org

Donate Now!The Spina Bifida Association of Illinois relies on public donations to continue its work. Your support helps us provide programs and services to more than 7,000 people with spina bifida throughout Illinois and northwest Indiana. To make a donation, please visit www.sbail.org or mail a check to SBAIL at 8765 W. Higgins Road, Suite 403, Chicago, IL 60631.

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Table of ContentsComing UpChicagoland Bowl-A-Thon — 4Central Illinois Support Group Meetings — 4Play Date Program — 4

NewsRun for SBAIL in the 2012 Chicago Marathon — 5Patrick Juris Scholarship — 5 Partnership with Viridian Energy — 6

ResourcesChanges in Health Care Resource Guide — 5Volunteers Needed — 6Spina Bifida in the News — 6From the SBAIL Photo Album — 7

Updates2011 Family Holiday Party — 5 Central Illinois Candlelight Bowl — 8First Look for Charity — 8Walk-And-Roll-A-Thon — 8Fall Family Classic — 9Swing for Spina Bifida — 10

People You Should KnowChicago Medical Society: Student Division — 8Midwestern University Physical Therapy Students — 9Mike O’Keefe — 10

Chicagoland BowlRead about our spring events

First Look for CharityMore updates from SBAIL

Profile: Mike O’KeefeRead more profiles

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Chicagoland Bowl-A-ThonPoplar Creek Bowl in Hoffman EstatesSunday, April 1st & Saturday, April 14th

Centennial Lanes in Tinley ParkSunday, April 15th

This year, the Chicagoland Bowl-A-Thon will be three days long and take place at two locations. The first two events will be at Poplar Creek Bowl in Hoffman Estates, Illinois. The final event will occur at Centennial Lanes in Tinley Park, Illinois. Begin raising pledges today at www.firstgiving.com/SBAIL to win great prizes! Please visit www.sbail.org/bowl.html for more information.

Central Illinois Support Group MeetingOSF — College Avenue Meeting Room

1701 E. College Ave., BloomingtonEvents begin at 7pm

The Central Illinois support group is a small group of parents, kids, and adults with spina bifida who meet monthly for topical discussions. Meetings are held at 7pm on the second Thurs. of each month, except July & Aug. At the April 12th meeting, Michell Haase, CEO and Founder of TravelinWheels (and parent of a child with spina bifida) will discuss travelling with disabilities. Questions? Contact Lynn Grabher Bradtke at lynn.bradtke@comcast.net. Sign up for our email list at www.sbail.org.

Play Date ProgramSaturday, April 21st Shriners Hospital for Children, ChicagoSunday, May 6th Glenview Park Center, 2400 Chestnut Ave. SBAIL’s new Play Date program is a safe and fun play opportunity for young children with spina bifida and their siblings combined with mini-workshops for parents and caregivers on relevant topics.

The April 21st workshop will focus on early intervention and learning strategies. The second spring event will occur on May 6th and will be an adaptive sports event. Other 2012 events will occur on July 21st, October 27th, and December 8th. Please call the SBAIL office at (773) 444-0305 with questions or to RSVP.

Camp IndependenceRegistration is now open for summer 2012 by calling (847) 547-8086. Camp Independence is a YMCA

overnight camp designed for people with spina bifida with age-specific sessions for people ages 7+.

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Bank of AmericaChicago Marathon FundraisingSunday, October 7, 2012Grant Park, Chicago, Illinois

This year, SBAIL has been selected as a Contributing Charity for the Bank of America Chicago Marathon. Already registered to run? Join Team SBAIL for the support of thousands of people statewide cheering you on!

SBAIL has a low fundraising minimum and offers perks to help make your training easier and more fun.Help support the 7,000+ families affected by spina bifida in Illinois by doing something remarkable: run the 2012 Chicago Marathon and help prevent and fight spina bifida!

Patrick Juris ScholarshipNew post-secondary educational scholarships

In memory of Patrick Jurishttp://www.patrickjurisscholarshipfund.org/

SBAIL and the Juris family have established a post-secondary educational scholarship, the Patrick Juris Scholarship Fund, in memory of Patrick Juris, Valiant Scholarship Winner, volunteer, and good friend of SBAIL.

The Patrick Juris Scholarship is a $3,000 award for a student pursuing a Master’s degree in preparation for a field of service that helps others. To apply, please visit www.sbail.org/programs.html#scholar.

Changes in Health CareToolkit available online at:http://sbail.org/health-care.html

Because of the recent changes to health care policies in America and Illinois, SBAIL has begun compiling some Health Care Toolkits to help families best address these transitions.

Some of these resources come from the Arc of Illinois and some are from other organizations and hospitals. SBAIL has decided to assemble a convenient list of the resources designed to guide individuals and families through health care legislation that is particularly relevant to people affected by spina bifida. Please visit the SBAIL website for more information about these guides and new health care legislation.

2011 Family Holiday Party UpdateThe 2011 Family Holiday Party was held on Saturday, December 3rd at the John G. Conyers Learning

Center in Rolling Meadows. Check out page 7 for some pictures from this year’s event!

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Volunteers Needed!SBAIL could use your help as a volunteer in a variety of ways. Most of our volunteer opportunities are in-office and anyone who feels they can help SBAIL is welcome to contact Matt Larsen at mlarsen@sbail.org or by phone at (773) 444-0305.

Aside from general office help, we offer volunteer opportunities in the fields of public relations, marketing, IT, fundraising, and event planning. We also welcome volunteers who wish to help with day-of-event activities at any of our upcoming events.

New Partnership with Viridian Energy CompanySBAIL has a new partnership with Viridian Energy. Go to www.sbailgoesgreen.com and help SBAIL by making a no-hassle switch to Viridian today. Save money. Go green. Please contact the SBAIL office for further information at (773) 444-0305 or sbail@sbail.org.

spina bifida in the news

stateTen-year-old Ethan Burkhart of Libertyville is a stand-out hockey player and recently played in a special demonstration at Lake Forest College. He is on GLASA’s sled hockey team.

Ethan’s mother, Jennifer, said that “the program is fantastic [and] all inclusive... It’s just amazing that everything is run on donations.”

http://bit.ly/yYyxqA

nationA five-year-old Massachusetts boy named Carter Bernhard will get to meet his lifelong idol, Bruce Springsteen. Bernhard has a debilitating form of spina bifida and has spent much of his life in the hospital.

In 2009, Bernhard put in a request at the Make A Wish Foundation to “eat bananas and pancakes with Bruce Springsteen.” Now, that wish will come true.

http://bit.ly/ynq8OX

worldA famed Puerto Rican astrologer, Walter Mercado, announced after a near-death experience that he will open a charity to help children and teenagers affected by spina bifida.

He will to begin funding the charity by selling his 200+ costume capes for over $1,000 each.He plans set to aside his fame as a magician to embark on a more philanthropic path.

http://bo.st/xR2Zqp

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Theme Parties: SBAIL StyleFrom the SBAIL Photo Album

With SBAIL’s mission to improve the quality of life of people with spina bifida, we try not to miss an opportunity to raise spirits by bringing families together for a little food, fun, and fancy dress. Enjoy these photo selections from the 2011 Halloween Party Play Date and Family Holiday Party. For many more photos, please visit www.facebook.com/SpinaBifidaIllinois. Special thanks to the U.S. Marine Corps Toys for Tots Foundation for tremendous support & help.

Dec. 2011C. Stanmar

Dec. 2011C. Stanmar

Dec. 2011C. Stanmar

Oct. 2011SBAIL

Oct. 2011SBAIL

Oct. 2011SBAIL

Dec. 2011C. Stanmar

Dec. 2011C. Stanmar

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Chicago Medical Society — Student DivisionJosh Williams, District Trustee

The Chicago Medical Society — Student Division pulls representatives from each medical school in Chicago in order to learn about trends in the practice of medicine. However, their focus isn’t only on the future of medicine; they do four big volunteer outings a year. This year, the SBAIL Holiday Party benefitted from one these outings & the CMS hope to return as volunteers.

According to Josh Williams, CMS chose to help SBAIL because the students realized that they would likely encounter people affected by spina bifida in their careers. According to Josh, the event would provide the medical students with valuable insights that would help their patient care. “At the event, we were able to talk to people living with spina bifida, which will further instill in us as future doctors that our patients are people, not just patients.”

According to Josh, the students were able to see the importance of organizations like SBAIL and how they can complement the work that medical professionals do. “SBAIL is able to act for patient advocacy and increases awareness of, funds for, and research on spina bifida. SBAIL really helps people affected by spina bifida discover new and useful ways to increase their quality of life.”

Candlelight BowlThe 2012 Central Illinois Candlelight Bowl was held on Saturday, February 4th at AMF Circle Lanes in Bloomington. Attendees enjoyed three games of Candlelight Bowling, shoes, pop, popcorn, & pizza. Great prizes were also raffled off throughout the event. Save the date for our next Central Illinois fundraising event, the 15th Annual Memorial Walk-and-Roll-A-Thon, Sept. 30th, in Bloomington, Illinois.

Memorial Walk-And-Roll-A-ThonThe 2011 Memorial Walk-And-Roll-A-Thon was held this September. The event was a great success and raised support for & awareness of spina bifida. SBAIL would like to thank the event sponsors: Enterprise Rent-A-Car, Central Illinois Corvettes Club, O.N.E. Coconut Water, OSF Home Care Services, OSF Medical Group, PB&PA Normal Unit 22, United Access, U.S. Cellular Coliseum, Visographic, & many others.

First Look For CharitySBAIL was honored to be one of 18 charity beneficiaries of the 2012 First Look for Charity, held on Feb. 9 at McCormick Place. More than 350 SBAIL supporters joined us for delicious hors d’oeuvres and drinks. All enjoyed a “First Look” at the 2012 Chicago Auto Show and the musical guest Blues Traveler. Special thanks to event sponsors, the Windy City Corvettes and Joy and Barry Bowen for their support.

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Midwestern University Physical Therapy StudentsBringing Gifts and Cheer to SBAIL — and Themselves

Physical therapy graduate students have a lot on their plate — especially in December. Their courses for the semester are winding down, finals are staring them straight in the face, and, on top of it all, they still have the holiday tasks of buying or making gifts for loved ones. But the students in the physical therapy program at Midwestern University did not let this stop them from helping spread holiday cheer to some complete strangers.

Vanessa Jason, a member of the physical therapy program at Midwestern University, says that she and her fellow students were looking for an opportunity to volunteer someplace around the holidays that was consistent with their career objectives. The Spina Bifida Association of Illinois stuck out to them because many of the students in the program are hoping to work with patients with neurological conditions and wanted to meet people affected by such conditions to become

better physical therapists.

According to Vanessa, none of the students were required to do volunteer work. Nevertheless, 15 students came on the first day of wrapping with more intending to come the following day to finish up the work. Considering that the program only has 47 students within it, this is a huge amount of generosity on the part of these busy students.

“We are planning to keep this up and make the SBAIL Holiday Party part of our annual duties. Everyone loved it and wants to go back,” says Vanessa.

While SBAIL and its families benefitted a great deal from these students, Vanessa says that the student volunteers benefitted just as much. “On behalf of everyone in our program, we are all so glad we were able to help with the SBAIL Holiday Party. We all wanted to thank SBAIL for letting us contribute to such a great program. We were all so excited to see the kids’ faces at the party when they got the gifts that we had helped to wrap and sort. They were all just so genuinely happy and excited that it really made us so glad that we were able to play a part in the event.”

“ The kids’

happiness really made us so glad

that we were able to play a part in the

event.”

Fall Family ClassicThe 2011 Fall Family Classic was held at The Center in Palos Park. The event was a huge success and raised money for individuals and families affected by Spina Bifida. SBAIL would like to thank our event sponsors for their support: Windy City Corvettes, Bard Medical, MSDS Writer, National Rehab, ActivStyle, Citgo Petroleum, Mark Drug Medical Supply, Shield HealthCare, WS&S Medical, and 180 Medical.

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Mike O’KeefeGiving Back for Grace

The O’Keefe Family has a certain generosity of spirit. Not only does this seem to strengthen their own family, but their generosity and kindness had certainly benefitted the SBAIL family.

Grace O’Keefe, Mike and Stacey’s oldest child, is a seven year old with spina bifida. The O’Keefe’s were not involved at all with SBAIL until Grace was a year old and, even then, it was minimally. The O’Keefes decided to increase their involvement, though,because they saw an opportunity to help SBAIL and for SBAIL to benefit them.

“We realized that we knew a bit about what other people affected by spina bifida were going through and we wanted to reach out and try and help even just one person’s life,” says Mike about his family’s involvement with SBAIL.

Since then, the O’Keefes have touched more than just one person. Mike has joined the Chicagoland Bowl-A-Thon Committee and brought in the support of 40-50 bowlers for the 2011 event. This outpouring of support has helped SBAIL continue its programming efforts like Play Date, Anixter Village, and Camp Independence.

Since increasing their involvement and seeing the reach of SBAIL’s programs and support networks, though, the O’Keefes have come to see how important SBAIL’s services can be.

“Right now, SBAIL is just our charity of choice so we can help other people affected by spina bifida,” explained Mike. “But we’ve begun to realize that all of these events could benefit Grace in the future.”

Through SBAIL events, Mike and Stacey have been able to provide Grace with networking opportunities. Grace has met older people with spina bifida, like Jessica Corona, an Anixter Village resident. For Grace, meeting Jessica was one of her first encounters meeting someone affected by spina bifida. It is this type of networking that has had such a profound impact on Mike and inspired his continued and increasing involvement.

“The biggest impact that SBAIL can have is simply providing a central location for families going through the same things to talk and share their successes and advice with other families.”

“ We wanted to

reach out and try and help even just

one person’s life [and now we see] these events could benefit Grace.”

Swing for Spina BifidaThe 2011 Swing for Spina Bifida was a great success. SBAIL thanks the event sponsors for their support, especially: Affiliated Engineers, Active Roofing Co., Chicagoland Commercial R.E., Gurtz Electric, Hamilton Partners, Hill Mechanical, Jamerson & Bauwens, Johnson Controls, Key Bank R.E., Magellan Corp., Mobility Works, The RISE GROUP, & the Shelton Family. Save the date for the 2012 event: September 13th!

Crossroadswinter & spring 2012

Spina Bifida Association of Illinois8765 W. Higgins Road, Suite 403

Chicago, Illinois 60631Phone: (773) 444-0305

Fax: (773) 444-0327www.sbail.org

Editor, Desginer, & Copywriter: Rachel Salemme