Fourth Annual Research Awards: Call for Nominations

The Illinois Spina Bifida Association (ISBA) is calling for nominations for its fourth annual Professional Advisory Council Research Awards for excellence in publishing in the area of spina bifida clinical research. Three prizes will be awarded for the best papers by a clinician or researcher published in a peer-reviewed journal between January 1 – December 31, 2018:

  • Winner: $500

  • First Honorable Mention: $300

  • Second Honorable Mention: $200

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Awards will be presented to the first author of each paper.

Nominations will be accepted from the field for articles that address clinical research in spina bifida.  Nominations will be reviewed by members of ISBA’s Professional Advisory Council as well as outside reviewers.  Award winners will be announced in Spring 2019.

Nominations must include a copy of the article and the following information for the first author:

  • Name of First Author:

  • Professional Title:

  • Name of Institution:

  • Paper Title:

  • Mailing Address:

  • Telephone:

  • Email Address:

Nominations must be sent to info@i-sba.org by 9am CST, Monday, December 10, 2018.

There are no geographic restrictions for nominations, but the first author must be a citizen or legal resident of the United States to receive a monetary prize.  For more information, go to www.i-sba.org/pac

Success Story: Spina Bifida Dads Can Help Each Other

Luis Carrizoza is the proud father of nine-year-old Luz Amelia, who goes by the name of Luz. She’s a happy and “awesome” Chicago fourth grader, who has had surgeries to close her back, implant and revise a shunt, release her tethered spinal cord, remove adenoids and insert ear tubes. She’s also had MACE and Mitrofanoff surgeries.

Luis is also a very thankful man. He’s thankful for what his daughter has taught him about life, and he’s grateful that he’s been able to help other dads in the spina bifida community. He credits the Illinois Spina Bifida Association (ISBA) community with helping him be a better dad.

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Luis and his wife Enedina are still learning how to navigate all the challenges of spina bifida. Like all dads in his footsteps, he readily acknowledged that it’s not always been easy.  “When your daughter is born with spina bifida, you’re scared. You have so many medical issues. Then there are the financial and emotional stresses. We have the same challenges as our daughter. We are just like our daughter.”

A turning point for Luis and his daughter came four years ago when Luz attended her first ISBA Play Date event. ISBA Play Dates combine informational and networking sessions for parents with structured play activities for children with spina bifida and their siblings. “Luz had been depressed because she couldn’t do what other kids do. Her world was different. But when she went to her first Play Date, her eyes were opened and her depression went away. She knew she wasn’t alone. There she got to interact with kids like her.”

That first ISBA Play Date changed her life and that of her mom and dad. Luz has attended more than 25 events since that first one. Her favorite is Halloween, for which the family will show up at 1pm and not leave until 4:30 in the afternoon.

Luz has made a lot of friends from the Play Dates. She has learned that she is not the only one in this journey and that there are many kids just like her. 

“My wife and I have made so many friends thanks to our daughter,” said Luis, who works long hours as the owner-operator of Carrizoza Auto Body.

Luis refers to one of those friends as his big brother. “His daughter is three years older than Luz, but he was there for me when I was trying to cope with spina bifida matters. Sometimes you just have to have somebody to talk to — somebody who knows what you’re dealing with,” says Luis.

Now Luis acts in the same capacity for other dads. “It’s a cycle. Being a spina bifida dad,” says Luis, “is a process. There’s plenty to talk about. We all have a lot in common. There’s a routine that you have to learn. An extended family helps support you to the maximum.”

As a big brother to other dads, Luis shares with them what he’s learned. “I can tell other dads that I know the emotional and financial stresses. It helps to talk with other dads. You’re always learning more about spina bifida, its direct and indirect consequences.”

On a Saturday in July, for example, Luis was attending ISBA’s Education Conference at Morton College in Cicero, IL, to learn more about how to handle financial challenges. Frustrated with what he considered inappropriate funding for his daughter from Social Security’s Supplemental Security Income program, he learned how to step-by-step appeal his daughter’s claim to that agency.

A big Chicago Cubs fan, Luis also attended an ISBA conference session on adaptive sports because he hopes one day to be Luz’s softball coach. For the time being, though, Luz, who uses both crutches and a wheelchair, favors swimming over softball. “She loves swimming. It’s almost as if we can’t get her out of the swimming pool,” says her dad.

The day Luz refers to her dad as coach, Luis will be proud, all right. But never as proud as he is of being called dad.

Illinois State Treasurer Michael Frerichs to Present Ways to Save to Statewide Spina Bifida Conference

A $25,000 grant from the Illinois Charitable Trust Stabilization Fund is helping adults with spina bifida to save with ABLE accounts and return to the workforce.

Illinois State Treasurer Michael Frerichs will discuss ABLE accounts and college savings plans at ISBA's July 21, 2018 Statewide Education Conference

The Illinois Spina Bifida Association (ISBA) has received a $25,000 grant from the Illinois Charitable Trust Stabilization Fund for its new ABLE Savers program.  The Illinois ABLE program helps people with disabilities to save while preserving their SSI and Medicaid.  

Illinois ABLE is sponsored by the state of Illinois and administered by the Office of the Illinois State Treasurer.

The Achieving a Better Life Experience Act (ABLE), passed by Congress and signed into law in 2014, allows for people with disabilities and their families to put their money in an ABLE account without counting against their asset limits for federally means-tested benefits.

ISBA's ABLE Savers program promotes workforce development among adults with spina bifida by pairing adults with community social workers to:

  • assess barriers and action steps related to participating in vocational training and employment;
  • increase knowledge about vocational training resources and ABLE accounts; and
  • to facilitate linkages to ABLE accounts and advocates specializing in Medicaid and Supplemental Security Income (SSI).

The ABLE Savers program is available at no cost to all Illinois adults living with spina bifida.

2018-19 Scholarship Application

Illinois adults with spina bifida are invited to apply for ISBA's educational scholarships, which can be used for a range of adult education activities.

Download the scholarship application, or contact us at info@i-sba.org or 773-444-0305 to request a mailed copy.  Applications are due by mail Nov. 1, with checks issued in December.

The ISBA scholarship program is made possible in part by “A Helping Hand”.

The Illinois Spina Bifida Association is honored to award 2 special scholarships:

The Patrick Juris Scholarship, awarded to a student with spina bifida preparing for a field of service that helps others. Patrick’s legacy as a friend, leader, and advocate will be remembered for years to come. To learn more about Patrick, visit www.patrickjurisscholarshipfund.org.

The Valiant Scholarship is awarded to a student who displays outstanding leadership, good will toward those less fortunate, and a dedication to making a difference. The scholarship is named after the late Bill Valiant, who with his wife Bonnie was instrumental in leading and growing ISBA for more than 25 years.

Registration Open for june 9 GoBabyGo Workshop

Registration is open for ISBA's third annual GoBabyGo workshop on June 9, 2018.  This program is made possible thanks to the generosity of statewide Kiwanis Clubs, led by the Kiwanis Club of River Forest and Oak Park, and volunteer engineers and clinicians from the Shirley Ryan AbilityLab and Shriners Hospitals for Children - Chicago.

GoBabyGo is a program of the University of Delaware committed to all people exploring their world via independent mobility. The Illinois Spina Bifida Association is proud to provide GoBabyGo workshops with statewide Kiwanis Clubs in which children age 1-5 receive custom electric ride-on cars that empower greater mobility and independence.

third Annual Research Award Winners

The Illinois Spina Bifida Association (ISBA) is pleased to announce the winners of its third annual Professional Advisory Council Research Awards for excellence in publishing in the area of spina bifida clinical research.  Nominations were considered for best papers by a clinician or researcher published in a peer-reviewed journal between November 15, 2016 –  December 31, 2017:

  • Winner - $500: Christina Holbein, PhD, et al, "Milestone achievement in emerging adulthood in spina bifida: a longitudinal investigation of parental expectations," Developmental Medicine & Child Neurology 
  • 1st Honorable Mention - $300: Alexandra Psihogios, PhD, et al, "Testing the Utility of a Bio-Neuropsychosocial Model for Predicting Medical Adherence and Responsibility During Early Adolescence in Youth With Spina Bifida," 
    Journal of Pediatric Psychology
  • 2nd Honorable Mention - $200: Jaclyn L. Papadakis, MA, et al, "Psychosocial and Family Functioning Among Latino Youth With Spina Bifida," Journal of Pediatric Psychology

We are grateful to all the researchers and clinicians who choose to spend their valuable time and expertise to advance the understanding of spina bifida and the care and treatment of people living with the condition.  

For more information, go to www.i-sba.org/pac

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Celebrating Three Decades of Partnership with Windy City Corvettes and Bill Kay

For three decades, the Windy City Corvettes, Bill Kay Chevrolet and Bill Kay Corvettes & Classics have held a Corvette & Cash Raffle benefiting ISBA.

On Dec. 19 the Windy City Corvettes charity committee presented ISBA with the $50,000 raffle proceeds.  

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Windy City Corvettes members are active partners with ISBA, sponsoring and helping run the annual Fall Family Classic, helping fund ISBA's emergency assistance program, and raising public awareness of spina bifida. 

"The generous support of the Windy City Corvettes and Bill Kay has transformed our organization," said Matt Larsen, ISBA Executive Director. "With their partnership, these great friends make it possible for us to serve people of all ages living with spina bifida throughout Illinois."

Buy raffle tickets for your chance to win a 2018 Corvette or $45,000.  Winner need not be present.

ISBA Completes Successful Program Pilot with Community Foundation of Central Illinois Grant

The Illinois Spina Bifida Association (ISBA) is pleased to announce the successful completion of the Community-Clinic Connection program pilot in Central Illinois in partnership with OSF HealthCare.

This program has been made possible in part by a $2,500 grant from the Fritz and Doris S. Reuling Charitable Fund, the Fontaine Earle Fund, and the Pete and Mildred Donis Charitable Fund of the Community Foundation of Central Illinois.

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"Through the generosity and stewardship of the Community Foundation of Central Illinois, ISBA has been able to increase social connections and access to resources for Central Illinois families, which can improve their health quality of life," said Matt Larsen, ISBA Executive Director.

The Community-Clinic Connection program will continue in 2018 in Central Illinois and Chicagoland. 

Third Annual Research Award: Call for Nominations

The Illinois Spina Bifida Association (ISBA) is pleased to announce its third annual Professional Advisory Council Research Award for excellence in publishing in the area of spina bifida clinical research. Three prizes will be awarded for the best papers by a clinician or researcher published in a peer-reviewed journal between November 15, 2016 –  December 31, 2017:

  • Winner: $500
  • First Honorable Mention: $300
  • Second Honorable Mention: $200
research.jpeg

Awards will be presented to the first author of each paper.

Nominations will be accepted from the field for articles that address clinical research in spina bifida.  Nominations will be reviewed by members of ISBA’s Professional Advisory Council as well as outside reviewers.  The award winner will be announced in Spring 2018.

Nominations must include a copy of the article and the following information for the first author:

  • Name of First Author:
  • Professional Title:
  • Name of Institution:
  • Paper Title:
  • Mailing Address:
  • Telephone:
  • Email Address:

Submissions must be sent to info@i-sba.org by 9am CST, Monday, December 18, 2017.

There are no geographic restrictions for nominations, but the first author must be a citizen or legal resident of the United States to receive a monetary prize.  For more information, go to www.i-sba.org/pac

ILLINOIS SPINA BIFIDA ASSOCIATION RECEIVES GRANT FROM ILLINOIS PRAIRIE COMMUNITY FOUNDATION

Contact: Matt Larsen, Executive Director, Illinois Spina Bifida Association

(773) 444-0305

info@i-sba.org

Media Release

The Illinois Spina Bifida Association, a statewide charity, has received a grant for $1,500 from Illinois Prairie Community Foundation.

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The grant is funded through Illinois Prairie Community Foundation’s Health and Wellness grant category. The grant will help the Illinois Spina Bifida Association fund its Community-Clinic Connection program that supports family resilience through case management services in home and community settings.

“We are thankful for the thoughtful and generous support that Illinois Prairie Community Foundation provides,” said Matt Larsen, Executive Director of the Illinois Spina Bifida Association. “With October marking Spina Bifida Awareness Month, we are dedicated to improving the quality of life of children, adults, and families in McLean, DeWitt, Livingston, and Logan Counties.” 

“By funding programs like Community-Clinic Connection, Illinois Prairie Community Foundation ensures that quality programs enrich the communities in which we live,” said Greg Meyer, Executive Director of Illinois Prairie Community Foundation. “We are committed to helping build strong communities in Central Illinois.”

During the current grant cycle, Illinois Prairie Community Foundation awarded $150,200 in three categories of grants to 54 programs in McLean, DeWitt, Livingston and Logan Counties. Grants ranged from $600-$8,200. Funding came from the Jerome Mirza Foundation, donors to the Foundation’s annual campaign and endowments.

The Illinois Spina Bifida Association serves all people living with spina bifida throughout the state.  Programs are available at no- or low-cost, and no membership is required.

About Illinois Prairie Community Fund

Illinois Prairie Community Foundation, now in its 21st year, encourages and facilitates philanthropy in McLean, DeWitt, Livingston and Logan Counties by connecting donors who care with causes that matter to them. The foundation currently manages assets of $11.2 million in 145 funds including donor advised, agency, and scholarship funds and endowments.

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Success Story: Sabrina Gets What She Needs for Her Swollen Legs

Sabrina Steward, 23, of Quincy, IL, has had more than 50 surgeries related to her spina bifida. In 2013, she was in the process of being evaluated for another tethered spinal cord surgery when she had a shunt malfunction, was placed on a ventilator and spent 20 days in a coma.

 Sabrina Steward with her cat Matayo, a/k/a Potato, at home in Quincy, Illinois.

Sabrina Steward with her cat Matayo, a/k/a Potato, at home in Quincy, Illinois.

As a result of not being able to get surgery on her tethered cord, she lost her ability to walk. After several years, physical therapy was successful in re-establishing a connection between her brain and legs. That was great. But when she started walking, her legs became dangerously swollen.

Recommendations for lower extremity edema typically include only limb elevation and use of compression garments.*  She tried compression socks, but they didn’t alleviate the swelling. Her vascular surgeon then prescribed a state-of-the-art compression therapy product or pneumatic compressor. The prescription was for the Lympha Press®, which squeezes out of her legs the fluid that makes them swollen. 

That’s when Sabrina’s clinical problems were joined by insurance woes.  She was told that Medicaid of Illinois didn’t cover the Lympha Press, which costs nearly $2,000, a price tag beyond Sabrina’s ability to pay.

But Sabrina was not to be denied. In April, she solicited the help of the Illinois Spina Bifida Association (ISBA). Its executive director Matt Larsen listened to Sabrina’s story and set out to help. After a half dozen phone calls to medical suppliers in Illinois, all of whom repeated what Sabrina had been told that Lympha Press was not approved for Medicaid reimbursement, Matt reached out to the US distributor of Lympha Press, Patriot Medical, in West Chester, PA. In turn, it contacted the customer service department one of its associates, Medical Solutions Supplier (MSS), also outside Philadelphia.

“That’s when our team went to work on Sabrina’s behalf,” says Brenda J. Viola, MSS’s director of marketing and public relations. “Our goal is to obtain approval through patient’s insurance by becoming their advocates and fully understanding their clinical case. In reviewing Sabrina’s case, we learned that what her doctor had been told about no insurance coverage for the pump was accurate in terms of spina bifida not being a covered diagnosis for the pump. But the diagnosis of lymphedema is. We knew Sabrina needed the pump or her surgeon wouldn’t have prescribed it.”

The result: MSS gave Matt the necessary Illinois Medicaid codes and supplier information for the vascular surgeon to get Sabrina the state-of-the-art medical equipment.

When Sabrina got her Lympha Press in May, “it took the fluid right out my legs,” she says. “My legs now are skinnier.  I can wear clothes and shoes that I couldn’t with my swollen legs. I’m grateful to all the people who helped me get the Lympha Press.”

Adds Sabrina: “The moral of this story is to never give up fighting for what you need.  Learn what you’re entitled to receive.  And remember that the ISBA is there to help.”

“It’s always important to work with durable medical equipment companies that ask questions on patients’ behalf. That’s what patient advocacy is all about,” advises Viola.

*LYMPH Link Article Reprint, Volume 17, No. 1 January~March 2005

# # #

The McHenry County Community Foundation Awards Grant to ISBA at August Ceremony

The McHenry County Community Foundation has named the Illinois Spina Bifida Association as a recipient of a $4,000 grant at the Foundation’s Grants Luncheon held August 22, 2017 at Boulder Ridge Country Club, Lake in The Hills, Illinois.  The Illinois Spina Bifida Association will use the grant money for its Community-Clinic Connection program, which provides community-based support and coaching services to increase family resilience, health quality of life, and the independence of children and adults living with spina bifida.

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The Illinois Spina Bifida Association is among 34 health and human services organizations serving McHenry County that received grants totaling $330,000 from the Foundation in this granting cycle.

The McHenry County Community Foundation connects the generosity of local donors with community needs through grants to organizations working to create a better quality of life throughout the county.

This brings the Foundation’s annual grant distributions for the 2017-18 fiscal year to $1.7 million – this highest in the organization’s 16 year history. For the past three years, the Foundation has provided funds to more than 70 organizations, protecting the human services safety net for those hardest hit by the economy, developing new audiences to sustain our county’s arts and education organizations, and improving conditions for healthy and active lifestyles.

“I’d like to congratulate the Illinois Spina Bifida Association for their work in our community,” said Robin Doeden, Executive Director of The McHenry County Community Foundation.

“The ultimate goal of the Foundation is to ensure that financial support from our generous donors goes to the most deserving nonprofits in our county. The Illinois Spina Bifida Association and others receiving grants today are doing great work to enrich the lives of McHenry County residents. The Foundation is honored to partner with them in the coming year,” added Doeden.

Foundation grant recipients underwent a thorough application and review process and demonstrated their nonprofit’s needs, goals, reach and potential to members of the Foundation’s grant committee.

“We are grateful to the generosity and leadership of the McHenry County Community Foundation and its donors,” said Matt Larsen, Executive Director of the Illinois Spina Bifida Association. “We look forward to expanding our services in McHenry County for children, adults, and families living with spina bifida.”  

The McHenry County Community Foundation distributes funds to Health and Human Services organizations in the early fall and awards Arts, Education, Environment and Economic Opportunity grants in the spring.  Local nonprofits interested in applying for funds should visit www.mccfdn.org or call Margaret Miller at 815.338.GIVE (4483).

McHenry County residents seeking to make a difference locally by contributing to The McHenry County Community Foundation can contact Robin Doeden at robin@mccfdn.org or call 815.338.GIVE (4483) or visit www.mccfdn.org.

About The McHenry County Community Foundation

The McHenry County Community Foundation is a trusted community leader, sponsor and participant encouraging philanthropy and welcoming partnerships to create a positive difference in the quality of life in all of McHenry County.

The McHenry County Community Foundation is a tax-exempt public charity created by and for the people of McHenry County.  We work with you to help you fulfill your charitable interests and goals.  We play a key role in addressing community needs, opportunities and dreams – now and in the future – in order to help make giving as effective as possible.

For more information please contact The Foundation at 815.338.GIVE (4483) or connect with us: www.mccfdn.org

About the Illinois Spina Bifida Association

The Illinois Spina Bifida Association (ISBA) works to improve the quality of life of children, adults, and families living with spina bifida, one of the most common, permanently-disabling birth defects in the U.S. The Illinois Spina Bifida Association is a 501(c)(3) nonprofit organization founded in 1969 by a group of dedicated parents. ISBA works to accomplish its mission with a three-part program strategy:

  • Promote skills development and independence;
  • Improve family resilience and access to resources through networks of outreach and education; and
  • Provide targeted financial assistance.