What is Spina Bifida?
Spina Bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD). According to the Centers for Disease Control and Prevention, 1,500 babies are born each year with Spina Bifida in the United States. Spina Bifida can happen anywhere along the spine if the neural tube does not close all the way. When the neural tube doesn’t close all the way, the backbone that protects the spinal cord doesn’t form and close as it should. This often results in damage to the spinal cord and nerves. Spina Bifida might cause physical and intellectual disabilities that range from mild to severe. The severity depends on:
The size and location of the opening in the spine.
Whether part of the spinal cord and nerves are affected.
For more information download this CDC fact sheet or download this SBWIS fact sheet. Click HERE to be directed to the Center for Disease Control spina bifida info pages, resources and guides.
Click HERE for a review article from the New England Journal of Medicine.
Locations of Pediatric Spina Bifida clinics in Wisconsin:
Children’s Wisconsin Milwaukee and surrounding area
American Family Children’s Hospital Madison and surrounding area
Marshfield Clinic western and northern counties
Gundersen Health System Neurodevelopment Clinic La Crosse and surrounding area
Adults can be seen in physician’s office around the state by doctors who specialize in physical medicine, rehabilitation, spinal cord injury, neurology, urology.
“Welcome to Holland”
by Emily Perl Kingsley, Copyright©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this……
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland.” "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.” But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
* * *
Join Spina Bifida Wisconsin, Ltd.
Spina Bifida Wisconsin, Ltd is a state-wide organization and maintains a data base of Wisconsin residents affected by Spina Bifida. By joining you will receive occasional emails about our events and services. SBWIS does not sell or share your email and there is no membership fee for joining.
CLICK HERE TO JOIN SBWIS
We believe in transparency to build your trust and we always recommend researching and verifying an organization’s 501c3 non-profit charitable organization status before joining or donating. To do this click HERE select charitable organizations and enter our name.
To view our privacy policy and terms of use click HERE
NON-PROFIT FORMS SUBJECT TO PUBLIC INSPECTION:
Upon written request, within 30 days, Spina Bifida Wisconsin, Ltd will provide our letter of exemption and 3 most recent 990 forms. To make this request, send your letter (include your contact information) to our office address and a representative from our Board of Directors will contact you.
SBWIS Guidestar / Candid Level of Transparency
SBWIS Officers, Board of Directors and Staff Members:
PReSIDENT:
Karen Drzewiecki, OTR
SECRETARY:
James B. Hanley, Esq.
TREASURER:
Michael Moulton, CPA
EXECUTIVE DIRECTOR:
Kathy Mohar
Directors:
Jeanne Bowman, Melanie Donnerbauer, Tim Gerds, Dr. Andrew Foy, Eileen Sherburne, Harpreet Singh-Gill, Brittney Stich, Jacob Peplinski, Jessica Hammond and Meetra Nahavandi
ADMINISTRATIVE ASSISTANT:
Tonya Villwock
Research related to spina bifida:
Within our mission to educate, SBWIS is willing to share United States IRB approved research that directly relates to the spina bifida population that we serve. Additional information, voluntary participation, and feedback should be sent directly to the contact person on the research flyer and description below. Images do not include direct links to external emails. If you would like to submit your research for our consideration, please contact Kathy Mohar, Executive Director at sbwis@sbwis.org.
Parents needed!
Parental Perceptions of Having a Child with Spina Bifida who is Intercountry Adopted
Who: Parents with children 1-21 years of age with spina bifida who are adopted from countries outside the United States.
What is Involved: Approximately 1-hour virtual interview on Zoom. Questions will be about the parent, characteristics of the child, questions about what it was like when you first adopted your child, the relationships your child has formed with family, friends, and your healthcare team, and any resources you have found in your community. You will receive a $25 Amazon gift card as a thank you for your time to participate.
Interested or have questions? Click HERE, add your information, and the researcher will contact you shortly. If the link doesn’t work, please copy and paste this into your browser; thank you!
Body Composition Study for Youth
Please consider participating in this research study about Body Composition and Energy Expenditure in Youth With SB. For more information about this study, and to read a PDF file with details and more information, click HERE.
You CAN make all the difference.
University of Wisconsin School of Medicine and Public Health
Why are Researchers doing this Study? Spina bifida is a congenital disorder with significant long-term complications and is the second most common congenital anomaly. We know that spina bifida is inherited, but a consistent genetic cause has not been identified. In addition, we know some environmental factors can cause spina bifida, including drugs (i.e., medicines), maternal diabetes, and exposure to heat. This information suggests that the inheritance of spina bifida might be epigenetic through a process called DNA methylation, which can be both affected by environmental factors and inherited. The purpose of this research is to study whether spina bifida is inherited via DNA methylation.
From Dr. Iskandar: Thank you for your interest in the research. We are starting multiple studies on spina bifida and currently have one active study in which we look at DNA methylation in patients with spina bifida and controls.
At this time, we are recruiting 30 SB patients and 30 controls from whom we get saliva specimens. There is no need for them to travel. We will do the consent and genetic interview by phone and send them the kit to their address. We are also interested in families with multiple members who have spina bifida to generate iPSC lines for Dr. Ashton’s organoid model. Importantly, we encourage volunteers to also ask a friend of the same age and sex to volunteer for the control group.
For more information click HERE.
UW Marquette Research
UW Marquette is researching and exploring the experiences of people with disabilities and their sexual relationships. This study will be led by Dr. Karisse Callender at Marquette University.
We are seeking participants to fill out a brief demographic survey and participate in an individual interview via phone or video chat. The demographic survey will only take about 2 minutes to complete, and then participants will participate in a 60-minutes individual interview.
The purpose of this study is to learn about the experiences of individuals with a disability and their sexual relationships. The responses to this study will help us to better understand how to improve the competency of professionals who engage in helping relationships with individuals with a disability.
Eligible participants must be: (a) self-identify as a person with a disability; (b) 18 years and older; (c) be their own guardian; (d) speak English as their primary language.
For more complete information click HERE
University of California San Diego
To The Organizers at Spina Bifida Wisconsin, My name is Krisha, and I am a research assistant in Dr. Joseph Gleeson’s lab at the University of California, San Diego. I recently came across your organization, and really admire all the work Spina Bifida Wisconsin has done to help support and care for families with Spina Bifida. Our lab is currently studying the genetic origins of Spina Bifida, and we are currently recruiting familial trios of biological father, mother, and affected child to participate in a simple saliva collection via the mail. Participating families will receive a package with the saliva collection kits, consent forms, and all necessary pre-paid return packaging. We then analyze the sample for unique changes in the child’s DNA that may contribute to their spina bifida diagnosis. Any information we find can be shared with the family, if they would like.
For the last few years our lab has been actively recruiting patients with Spina Bifida and have formed many collaborations with Spina Bifida clinics, organizations, and providers. Our goal with this project is to provide as much information as we can to affected individuals and families. We are hoping to work with organizations like yours to recruit a more diverse cohort and increase representation within our research. I have attached our flyer, in both English and Spanish, for you to review. If you are interested, we would be happy to schedule a zoom meeting to discuss the collaboration. Please feel free to contact us at anytime at gleesonlab@health.ucsd.edu
Best regards, Krisha Bagga
For more information click HERE
Manual wheelchair users; scan code to complete survey
University of Wisconsin – Milwaukee Advanced Mobility Biomechanics Lab, USRB 285
Title: Community Mobility and Participation Assessment of Wheelchair Users
Purpose: The Purpose of the study is to assess and understand how manual wheelchair users move around in their community and participate in different activities and compare their day-to-day life activities to that of an established clinical measure.
Eligibility Criteria: • Male or Female • Ages 18 and Older • No current shoulder-related injury • No Upper body surgery in the last 12 months • Must be using a manual wheelchair for daily activities or operate a manual wheelchair independently
What will I do? (1 Lab visit; ≈ 2.5 hours): Participation includes questionnaires, upper extremity strength and wheelchair assessments.
Will I receive anything for participating? • Participants that complete both parts will receive up to $50.00 ($25 each part).