Constituent Information
The Spina Bifida Association of Wisconsin, Inc. is no longer charging membership dues!
Constituent Benefits
- Receive funding from the Spina Bifida Association, Inc.
- Students with Spina Bifida have the opportunity to apply for local and national higher education scholarships
- Network with families and people affected by Spina Bifida
- Attend events and workshops sponsored by the Spina Bifida Association of Wisconsin, Inc.
Constituent Data Form
Affiliate Data Form
- This form is to be used by extended family, friends, professionals, and supporters of the Spina Bifida Association of Wisconsin.
Click here to download the form
You can return the forms via fax, mail, or e-mail.
Useful Links
International Spina Bifida Links
National Spina Bifida Links
- Spina Bifida Association's mission is to promote the prevention of Spina Bifida and to enhance the lives of all affected.
- SB Preparations is a site created to give parents and clinicians tips and tools to help children with Spina Bifida develop into successful and happy adults.
The Spina Bifida Research Resource
- The SBRR is a project, funded by the National Institutes of Health, to study the causes of Spina Bifida and anencephaly. To succeed, this project requires a partnership between scientists and families.
- National Council on Folic Acid works to improve health by promoting the benefits and consumption of folic acid.
- National Center on Birth Defects and Developmental Disabilities within the Centers for Disease Control and Prevention promotes the health of babies, children, and adults, and enhances the potential for full, productive living. The NCBDDD's work includes identifying the causes of birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.
Wisconsin Links
- Access to Independence (Madison area) and IndependenceFirst (Milwaukee area) are independence living centers dedicated to assisting persons with disabilities to be independent. For the independent living center serving your area click here.
- Arc-Wisconsin is an organization that promotes the quality of life for people with developmental and related disabilities and their families.
- Bridges4Kids contains information for parents and teachers. Some of the information included is state government information, statewide organizations for individuals with disabilities, and information on Wisconsin Early Childhood programs.
- DAWN is a statewide grassroots cross-disability network of people who care about disability issues. DAWN supports legislative change in the programs and systems affecting people with all disabilities. DAWN focuses on the most important issues affecting all people with disabilities. It includes people with disabilities, family members, friends, service providers and others who are committed to enhancing the lives of people with disabilities. The Wisconsin Council on Developmental Disabilities funds DAWN as part of the State Plan on Developmental Disabilities.
- Kerry Hills Farm near Oconomowoc, WI, makes a line of therapeutic wool bedding which may help in the prevention or healing of bed sores and ulcers. SBAWI is not promoting this product, but thought to pass along the information in hopes that it is helpful to you. If you have used any of these products let us know. We'd like to hear how they have worked for you, and then we'll pass along your feedback to others who are considering a purchase.
- Milwaukee Moms is a great site full of information and fun ideas for the whole family. There are photo contests, discussion groups, ideas for outings, and movie reviews! The site also includes a parks directory, business directory, drive thru directory, and monthly community events calendar.
- MobilityWorks carries a large selection of handicapped vans and handicap conversion vans. Their inventory includes full-sized vans as well as minivans. All MobilityWorks' dealerships are modeled after traditional dealerships and offer both used and new vehicles. Each location also features an onsite service department that can handle the maintenance requests for handicap or wheel chair vans.
MobilityWorks always seeks to exceed customer expectations, and it is one of only 30 companies nationwide that has passed the requirements of the National Mobility Equipment Dealers Association. In addition, the company has passed Ford Motor's Quality Program of mobility adaptation.
All staff members at MobilityWorks dealerships take pride in the personalized service and quality products they offer customers. MobilityWorks has a local location in Waukesha.
- Southeast Regional Center for Children and Youth with Special Health Care Needs (Formally Special Needs Family Center of Children's Hospital of Wisconsin) is a good resource to check out periodically. You may visit the Web site or visit in person. The center is a wonderful place to find the information and support from friendly and knowledgeable people, plus the events hosted by the center are not to be missed. Many Spina Bifida families are already taking advantage of all the great things happening at the Southeast Regional Center for Children and Youth with Special Health Care Needs.
- StudioWorx is the official photographer of the Sprint for Spina Bifida, Darryl Adamczak.
- Wisconsin Council on Children and Families: The mission of the Wisconsin Council on Children and Families, WCCF or the Council, is to ensure that every child in Wisconsin grows up in a just and nurturing family and community. The Wisconsin Council on Children and Families was established in 1881 as the Wisconsin Conference on Charities and Corrections. For well over a century, the organization has focused on improving conditions for families and children through policy change, expanded public investments and public education that lead to improvements in outcomes and practices in the delivery of publicly funded health care, education, workforce development and social services. The Council is a private, non-profit, non-partisan statewide organization with offices in Madison Wisconsin.
- Wisconsin Department of Health and Family Services
- Wisconsin Facets provides many services to help parents and other support and enrich the lives of their children. Some of the services they provide include: Information and referral, workshops, Individual assistance for challenging situations, support for mediation, support groups, and parent leadership development.
- Wisconsin Medicaid: This link provides you a "Who to call" sheet for Wisconsin Medicaid and BadgerCare HMO Programs.
- Spina Bifida Kids - BabyCenter: This group is for parents of children with Spina Bifida, including moms who are pregnant with babies who have been diagnosed with Spina Bifida. It's a place to ask questions, find support, and make friends.
Financial Links
- The Ford Mobility Motoring Program offers financial reimbursement of up to $1,000 toward the cost of adaptive equipment for Ford, Lincoln and Mercury vehicles.
- SHARE is a program that encourages nutrition and family togetherness for all people. They make this possible through very good, easy to prepare (recipes are right on the web site), and very affordable food packages that you can order each month and pick up in your own community. This is for all people of all economic levels.
- United HealthCare Children's Foundation is now offering to support the needs of children with assistance grants for medical services not fully covered by health insurance. Parents and caretakers will be eligible for grants up to $5,000 for health care services that will help improve their children's health and quality of life.
- Variety - the Children's Charity of Wisconsin helps children gain independence and freedom by helping to provide funding to get the equipment that will allow them to be more independent.
- Wisconsin Home Heating Assistance Program is a federally-funded program that helps eligible households pay a portion of their home heating costs. The amount of heating assistance benefit depends on the household's size, income and heating costs.
General Information Links
- Parenting Special Needs is a free e-resource for parents of children with special needs. Sign up now for FREE!
- The Disability is Natural Web site tells us that a green apple is more like red apples than different. An individual with a disability is more like people without disabilities than different. Apples are natural. Having a disability is a "natural part of the human experience" (as expressed in the U.S. Developmental Disabilities Act). The sun shines equally on all the apples in the bowl, and it's time for the light of inclusion, opportunity, freedom, and dignity to shine equally on all people— including people with disabilities.
- Family Village is a global community that integrates information, resources, and communication opportunities on the Internet for persons with disabilities.
- Going to College is a great resource for people with disabilities. This site helps you plan your college journey and figure out what types of services you will need.
- Kids Health this site is a wonderful easy to use site for adults and kids alike. There is information on everything from dealing with feelings and staying healthy to health problems. Also check out the page on Spina Bifida under Kids' Health Problems. This page contains an easy to understand explanation of Spina Bifida and its problems that young children will be able to understand.
- New Horizons is a website that brings a multitude of disability-related resources together, covering such issues as housing, employment, education, independent living, legislation and more.
PACER Kids Against Bullying Children in second through sixth grades now have an entertaining, safe way to learn how to respond to bullying. PACER's new Kids Against Bullying Web site includes a cast of 12 animated characters, celebrity videos, kid videos, Webisodes, games, contests, stories, artwork, poems, information, and much more. The site is for all children. Children with disabilities are integrated throughout the website.
- The Museum of Disability: This website is presented by People, Inc., a non-profit human service agency serving people with special needs, seniors, and their families in Western New York. The website contains virtual exhibits documenting various aspects of the history of individuals with disabilities, as well as an extensive bibliography.
- Jean Driscoll is a world-renowned athlete who was born with Spina Bifida. Her motto is "Dream BIG and Work Hard." This Web site tells of her amazing successes as an Olympian, Paralympian, motivational speaker, corporate spokeswoman, author and professional athlete.
- Songs of Love Foundation is a non-profit organization dedicated to providing personalized songs for children and young adults with chronic or terminal health conditions. Check out the web site to hear some of the songs that have been written specifically for individuals at the request of parents, guardians, or hospital staff.
- United Medical Providers provide free home delivery of catheter & catheter supplies.
- Youthhood is a website designed to help teens with disabilities in transitioning to adulthood. The site is full of great information, activities, and helpful ideas for teens and adults who work with teens.
Medical Links
- The Cecostomy Web site was designed to give the visitor a better understanding of what a cecostomy is, the steps in a cecostomy surgery and how to maintain a cecostomy. Other topics include: how the digestive system works, how to give an antegrade enema, the difference between a retrograde enema and an antegrade enema, and the importance of fiber and water.
- Hydrocephalus Association's mission is to provide support, education, and advocacy to people whose lives have been touched by hydrocephalus and to the professionals who help.
- Learning Disabilities Association of America is the largest non-profit volunteer organization advocating for individuals with learning disabilities and has over 200 state and local affiliates in 42 states and Puerto Rico. LDA's international membership of over 15,000 includes members from 27 countries around the world. LDA provides information on Nonverbal Learning Disorders and has additional links on their resource page.
- Spina Bifida Association Fact Sheets: Developed as part of the SBA National Resource Center (NRC), these fact sheets provide in depth information on health and interest topics related to Spina Bifida.
- Genetic Abnormalities In Sperm Linked To Dietary Folate Intake: Study shows healthy men who report lower levels of the nutrient folate in their diets have higher rates of chromosomal abnormalities in their sperm, according to a new study by researchers at the University of California, Berkeley, and the Lawrence Berkeley National Laboratory.
Sports and Recreation Links
- Extreme Chairing provides information on extreme wheelchair sports to help enable people to break free from the stereotypical barriers imposed on people with disabilities.
- Southeastern Wisconsin Adaptive Ski Program (SEWASP) provides adaptive alpine skiing lessons for people with disabilities in southeastern Wisconsin.
- Wisconsin Amateur Hockey Association (WAHA): The Warriors are a Wisconsin sled hockey team. They will bring the equipment for your team to play in the sleds and compete. This a great team building event and an opportunity for your kids disabled or not!
Wheelchair Basketball
- Mad City Badgers is a Wisconsin competitive wheelchair basketball team in the Madison area.
- Milwaukee Heat is a Wisconsin competitive youth wheelchair basketball club. No website is available at this time for the team. Contact: Jim Zomchek, Adaptive Sports Coordinator, (414) 647-6043. E-mail: zomcheja@milwaukee.k12.wi.us
- Wisconsin Warhawks: University of Wisconsin - Whitewater wheelchair basketball team. UW-Whitewater also provides a summer wheelchair basketball camp. Go to this link.
Travel Links
- Freedom Shores Resort is a fully accessible resort in Isla Aguada, Campeche, Mexico for reasonable prices.
- National Parks: Accessible to Everyone showcases accessible trails and activities that are available through the National Parks System
- Society for Accessible Travel and Hospitality (SATH) provides valuable information on traveling with a disability. Along with general information for traveling with a disability, this site also has a link to many airlines' disability information pages, helpful article, and travel regulations and restrictions.
- Welcome H.O.M.E. (House of Modification Examples) Bed & Breakfast is a fully accessible bed and breakfast in beautiful Newburg, WI. This home was designed as an example of barrier free living for persons with physical disabilities. Visit Welcome H.O.M.E. as a vacation destination and/or as way to get ideas for making your home more accessible.
- When We Travel is a vacation and trip planning web site that gives you the power to search for specific vacation and travel destinations, tourist attractions, activities, restaurants, hotel accommodations, and airfare based on your unique requirements. The site even includes tips on finding truly accessible hotel accommodations.
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What types of funding do you offer?
Newborn Fund
The Newborn Fund is established for new families at the birth or adoption of a child with Spina Bifida in the State of Wisconsin. This fund is meant to welcome families to SBAWI and lend support for their expenses. Families will only receive this funding one time for each child with Spina Bifida. Payments are made when SBAWI has been notified and provided adequate proof that a child with Spina Bifida was born or adopted in Wisconsin. The newborn fund pays families $100.
Family Fund
The Family Fund is established to help families with any unexpected and/or burdensome expenses. Requests need to be submitted in writing, but do not need to disclose the use of the fund, unless asked to do so by the board of directors. The board, at its discretion, may request a written explanation of the purpose for the request before funds are distributed. The maximum amount that can be paid from the Family Fund is $100 per family per calendar year.
Sports and Recreation Fund
The Sports and Recreation Fund is established to enhance the well-being and promote healthy lifestyles for people with Spina Bifida. SBAWI prefers to make payments directly to the program sponsors. Reimbursements will be made to families when proof of payment has been submitted to the Spina Bifida Association of Wisconsin, Inc. The Sports and Recreation fund maximum amount per family is $150 per calendar year. It can be used for registration costs of any sports or recreation program or toward the purchase of home exercise equipment. Funds cannot be used for costs of uniforms, additional equipment, or supplies, except those that are necessary due to Spina Bifida.
Campership Fund
The Campership Fund is available for anyone with Spina Bifida, ages 8 and over, wishing to attend summer camps. Each individual may receive one campership per calendar year to attend camp. The purpose of this fund is to promote independence and socialization. SBAWI will pay up to $1,000 for registration fees to any camp in the United States. Expenses other than registration will be covered at the discretion of SBAWI. Funds are dispersed directly to the camp after the family provides proof of registration or can be reimbursed to the family if they have proof they have already paid the camp registration fee.
Download the Campership Fund Application here.
Conference Fund
The Conference Fund is established to help individuals and/or families attend the Spina Bifida National Conference. Funding from SBAWI is limited. The Conference Fund amount may vary, but is typically equal to the cost of one member registration fee per family. Conference attendees are required to report to SBAWI on their experiences at the conference, including what they found to be of value, what they learned, etc. in writing following the conference. Funds will be reimbursed to the individual after this report is submitted.
Download the Conference Fund Application here.
SBAWI Educational Scholarship in Memory of Mary Ann Potts, Ph.D.
The SBAWI Educational Scholarship in Memory of Mary Ann Potts, Ph.D. is available to students pursuing post-secondary education or vocational training with an accredited institution. Funding should be used for expenses such as tuition, books, room and board, transportation, and specialized equipment needed for education/training purposes. Students who meet the eligibility requirement, as listed on the application form are eligible to apply. Students must possess a high school diploma, GED, or equivalent before scholarship is paid.
Scholarship applications, including all attachments are due by April 1 of each year. Scholarships are awarded to students who are/will be enrolled in post-secondary education or vocational training during the fall of the same year. Only one student will receive the scholarship each year. Students who have been awarded the scholarship in the past will be eligible to receive the scholarship in subsequent years, but priority will go to students who have not yet received a scholarship.
This should not dissuade students from reapplying, as some years there are no scholarship applicants. When more than one application is received, scholarship applications will be rated on financial need, academic record, community service, work history, and leadership. The SBAWI Board of Directors has the final authority for all scholarships. As this fund is awarded on a competitive basis, board members are not eligible.
Download the Scholarship Application here.
How do I receive funds?
You can submit your request in written or electronic format via mail or e-mail. |
