Finding Your Voice

Education Day is an event for families and individuals living with Spina Bifida, as well as the caregivers and healthcare providers that care for them. There are speakers, programs and activities for all ages, including free childcare with a fun theme and a special program for siblings.

When

April 21, 2017
April 22, 2017

Where

West Des Moines Christian Church
4501 Mills Civic Parkway
West Des Moines, IA 50265

Map

Tell us your story

Tell us about you and your family. What is working in your life? What challenges do you face? What helps you or gets in your way? What advice do you have for teens, adults, parents and caregivers, based on your experience.

Send your comments, photos and videos to Stories That Move Us on the SBA of Iowa website. We want to get to know you better!

Enter

Speakers

Andy Offutt Irwin

October of 2015 marked Andy Offutt Irwin sixth year as a Featured Teller at the National Storytelling Festival. He has appeared ten times as Teller in Residence at International Storytelling Center. Among other gigs, Andy has been a Guest Artist at La Guardia High School of Art, Music, and Performing Arts in New York (The “FAME!” School); he has been a Keynote Speaker/Performer at the Library of Congress-Virburnum Foundation Conference on Family Literacy; a Guest Writer Performer with the Georgia Tech Glee Club; and a guest composer with the Amherst College Men’s Double Quartet.

Andy has held a few almost-real-jobs that include: Artist-In-Residence in Theatre at Emory University’s Oxford College from 1991 to 2007. (He continues serving at Oxford from time-to-time as Artist-in-Just-Passing-Through). A very long time ago Andy spent five years as a performer, writer, and director for SAK Theatre at Walt Disney World.  Andy is the recipient of many awards, but he is tickled as can be to have received the Oracle 2013 Circle of Excellence from the National Storytelling Network.

Konrad Szymanski, M.D., M.P.H

Konrad Szymanski Assistant Professor at Indiana University School of Medicine.  He is a pediatric urologist specializing in reconstructive surgery of congenital abnormalities. After graduating from the University of Toronto Medical School, Toronto, Canada, he completed his Urology residency at McGill University, Montreal, Canada.

Dr. Szymanski’s clinical interests include hypospadias, undescended testicles, congenital upper tract anomalies, ureteral reimplantation and complex genitourinary reconstruction. His research interests include patient-reported quality of life and long-term outcomes after surgery performed in childhood. He is recognized for his work on quality of life with children and adults with Spina Bifida, as well as health issues faced by young adults growing into adulthood after complex genitourinary reconstructive surgery.

 

 Peter Kim, M.D., Ph.D.

Peter Kim, M.D., Ph.D., is a pediatric neurosurgeon from Gillette Children’s Hospital. He received his medical degree from the SUNY Upstate Medical University in Syracuse, N.Y., after receiving a Ph.D. in molecular biology and biochemistry from Wesleyan University in Middletown, Conn. He completed a neurosurgical residency at SUNY Upstate Medical University and pediatric neurosurgery fellowship at Children’s Hospital in Pittsburgh.

Kim has published widely, with numerous peer-reviewed journal articles as well as several book chapters. He is co-editor of a book on infections of the central nervous system that will be published in 2012. He has presented his research on molecular mechanisms of tumor recurrence as well as outcomes assessment in neurosurgery at national meetings.

Julie Yindra

Julie Yindra is Director of Hofstra University’s Division of Student Affairs in Long Island, New York. An adult with Spina Bifida, she has served on the board of the SBA of America.  She is an enthusiastic advocate for improving medical care for individuals with Spina Bifida and serves as a liaison to the Spina Bifida World Congress. 

Diane Glass

An adult with Spina Bifida, Diane is spearheading a project to document and share the stories of other adults with Spina Bifida.  A spiritual director and author, she teaches classes in spirituality and health to medical students at Des Moines University, as well as workshops on living with chronic pain for caregivers and patients. Diane has published a memoir on growing up with Spina Bifida, “This Need to Dance: A Life of Rhythm and Resilience.” 

 

Jaine Benson

Jaine Benson is a life coach who practices stress management using Emotional Freedom Techniques for PTSD and addictions, muscle testing for stress defusions, NLP imagery for minimizing obsessions, and hypnosis therapy for relaxation and calm. She is a graduate of Augsburg College, HMI, and UNI (Ed. Psych) with many studies including D.I. Hom., and N.D.  Jaine resides in Cedar Falls and has an adult son with Spina Bifida.

Jeff Raun and Dennis Burns

Dennis Burns and Jeffrey A Raun offer securities and investment advisory services through AXA Advisors, LLC and offer annuity and insurance products through AXA Network, LLC and /or its insurance agency subsidiaries.  Dennis and Jeff added Connect the Dots for Life to deliver value-added resources for individual and families with disabilities and special healthcare needs to their financial services. They are uniquely knowledgeable about and connected with the Iowa Special Needs Community.

Megan Sorenson 

 Megan Sorenson is the Chairman of the Board of the Spina Bifida Association. In her spare time she is Clinical Manager, Critical Care Transport at Children’s Hospital and Medical Center-Omaha. Her husband Chis is a newly elected member of the Board of Directors of the Spina Bifida Association of Iowa. They reside in Council Bluffs and have three children Alyson, Carly and Kyle.

 

Tarin Carter

SBA National Siblings Program Director

Karen Spriggs, R.N.

Karen just joined Coloplast in February as one of our Clinical Consultants in our continence division with a focus on our Peristeen product.  Prior to Coloplast, Karen held numerous clinical roles in Pediatrics with the last 16 years focused in Pediatric Urology.   Her most recent position was the Senior Clinical Nurse in the Pediatric Urology Clinic at Johns Hopkins Hospital in Maryland. 

Karen has taught medical students, advanced practice nursing students and multiple other colleagues on understanding the need for catheters and Peristeen, and developed and delivered presentations on the Spina Bifida population for clinics and DMEs.  Her passion for the patient is evident in everything she does and says

Lodging

A block of rooms has been reserved at:

West Des Moines Marriott
1250 Jordan Creek Parkway
West Des Moines, Iowa
515.267.1500

SBA of Iowa will reimburse $50 toward your room for Friday and Saturday nights. Reimbursement forms will be available at registration on Education Day. Additional travel and lodging support available upon request.

Marriott

Free Childcare

April 22 is Earth Day! Kids can get in on the fun!

Ernie and Mindy Adkison and Andy Offutt Irwin will have a great time with your children celebrating Earth Day with music and strories. Childcare is available for ages birth through 12.  You MUST request child care in your online registration so that we will be able to meet your needs. No drop ins.

Registration Fee

Cost to attend both Friday and Saturday is only $15 per family or $10 per individual and includes all food/snacks and all materials. Should cost be prohibitive please let SBAI know.  Scholarships are available.  Travel support may also be made available in some situations.

Additional Questions?

For additional information call Carlyn Crowe at 515-974-7775 or email Carlyn.Crowe@sbaia.org.

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