Campership fund

The Campership Fund is established to promote activities that provide independence and socialization in a camp setting, and is available, as funds allow, for our members with Spina Bifida, ages 7 and older, wanting to attend their favorite day or overnight camp. Campership funding is $700.00 per calendar year and must be paid directly to the camp. It is your responsibility to communicate with the camp to invoice SBWIS, and ensure payment is received by their registration deadline. We wish to thank U.S. Venture/Schmidt Family Foundation for a generous grant to support this service.

Specific to campers wishing to attend something at UW-Whitewater, the steps are a bit different. First, complete our request for campership funding. When approved for funding, you’ll receive an email that includes an online registration code. Enter this code when you complete the UW-Whitewater online registration, $700.00 will show as paid, and you can proceed with completing their process.

For a list of summer camp possibilities, scroll on this page to the resource lists and click download.

CLICK TO REQUest campership funding

TODDLERS ON THE MOVE PROGRAM

SBWIS recognizes the importance of exploration for a child's growth and development. SBWIS loans qualifying Wisconsin toddlers a zipzac mobility device for up to 3 years for FREE (with a $160.00 cash deposit; refundable upon return of the equipment if contract is adhered to 100%). Allowing a child independence and mobility improves their quality of life. Consider the importance of providing a tool for your child to gain mobility, independence and expand their opportunity to explore their environment. Experience has shown that using a zip zac does not delay or prevent your child from the potential of being ambulatory. Parents have remarked how having this tool has motivated their toddler to move, helped them understand they can initiate movement, learn skills that transfer to using a walker or wheelchair and reduced their child’s frustration.

*Due to the nature of the zip zac seat it absorbs smoke odor. We have dedicated 1 red and 1 blue zip zac for smoking homes.

Click for more information and to enroll

caregiver guide

This guide was developed mainly by parents of our youngest members with Spina Bifida. The intent of the guide is a tool to use when customizing a guide about your own child to provide caregivers. The instructions can be downloaded and viewed by clicking HERE.

Download and open the guide to customize for your own child by clicking HERE.

adaptive RECREATION PROgram or equipment FUND

This fund is established to promote healthy lifestyles and community involvement for children and adults with Spina Bifida. Funds can help with YMCA membership, wheelchair basketball program fees, sled hockey fees, City Park and Recreation program fees or towards the purchase of recreational adaptive equipment. Equipment examples include sport wheelchair, outrigger poles for snow skiing, specialized bicycle, magnifier for reading, cooking and art supplies. Requests can be made for $150.00 by parents/guardians and adults with spina bifida once per calendar year. We would like fund recipients to provide a photo and testimony for SBWIS to share with our donors and followers on social media.

CLICK TO REQUEST recreation FUNDING

Life Could Be Better Fund - NO LONGER AVAILABLE

We are currently seeking funding from grants and foundations for the following projects that will directly benefit our members:

• Trust Us, We Can Help financial assistance for legal fees related to developing a special needs trust or establishing guardianship

• Footwear Fund to increase the reimbursement amount to $75.00

• Hosting social events in areas across WI promoting valuable peer support among our members

• Creative Solutions financial assistance to attend live performing arts (music/drama/dance) performances

• UTI, not I financial assistance for incontinence products, UTI prevention supplements to promote bladder health

• Executive Functioning Toolbox financial assistance for purchasing items related to adapting and coping with executive functioning skill deficits

FAMILY FUND

The Family Fund is established to help parents/guardians afford expenses related to caring for their child with Spina Bifida. Appropriate requests include assistance in paying for medical expenses, insurance copayments, incontinence products, shoes, over the counter medications and supplements. To request Family Fund assistance, click below and complete the online form. Requests can be made for $150.00 once per calendar year per child with Spina Bifida (birth to 17 years of age).  

CLICK TO REQUEST FAMILY FUNDING 

Footwear fund

We recognize the expense and limited selection of options for our members so this fund was established and replenished Giving Tuesday, 2023 and an Anonymous donor in 2024. This reimbursement fund contributes up to $50.00 to our members (age 3 years and older) towards your purchase of shoes, boots, socks, adaptive footwear, specialty footwear. Reimbursement can be requested for up to $50.00 one time per calendar year by completing this form and submitting via email proof of purchase/payment. Thank you to our Giving Tuesday donors and the Anonymous donor that made this fund possible.

CLICK TO COMPLETE AND SUBMIT REIMBURSEMENT REQUEST

Mary Ann Potts SCHOLARSHIP FOR HIGHER EDUCATION FUND -ACHIEVE YOUR DREAMS!

We admire the drive and tenacity it takes for our members to pursue higher education. SBWIS is proud to offer this financial assistance due to the generous donation from the Potts family in memory of Mary Ann Potts, Ph.D. who had Spina Bifida and achieved her dreams! This fund was established in 1996 by the Potts/Weaver family. We want to learn about your dreams and future plans. Your application must communicate your goals and help us understand how you tackle life and overcome obstacles to reach these goals. Deadline for submission is midnight April 28, 2024. Good luck!

CLICK FOR MORE INFORMATION & SUBMIT APPLICATION

adult independence fund

This fund was established to help adults with Spina Bifida (age 18 years or older) afford expenses related to living with Spina Bifida. Requests can be made to help you afford things like transportation, home security systems, moving expenses, rent, incontinence products, medications or supplements, service dog expenses and vehicle repairs. To request Adult Independence Fund assistance, click below and complete the online form. Requests can be made for $200.00 once per calendar year per adult with Spina Bifida (age 18 years and older).  You can not request both Family and Adult Independence Fund Assistance in the same calendar year.

CLICK TO REQUEST ADULT INDEPENDENCE FUNDING

Blankets and hugs

When your family member with spina bifida is hospitalized, or recovering at home after surgery, our wish is to offer comfort from our community. These blankets were made by volunteers and can be mailed to you. When covered in the blanket, think of it as a hug, from us to you! Complete this request form, and the blanket will be shipped directly to your home.

CLICK TO REQUEST A BLANKET

MATCH AND MEET

SBWIS members can opt in to this program when they request services. You are giving permission for SBWIS to share your first name and email with other SB families to help you connect with others in your age group and/or geographical location.  This program encourages the peer support that is vital when you or a family member has SB.  When SBWIS has identified a MATCH, an email will be sent to both of you so you can contact each other and potentially MEET.

CLICK TO AGREE TO MATCH AND MEET

BIRTHDAY SHOUT-OUT

We are doing social media birthday announcements for our members with Spina Bifida that includes a photo and brief bio (first name, age, county of residence, hobbies and interests). We will email you prior to the birth date to collect this information.

CLICK TO COMPLETE & SUBMIT FORM

Email blasts

We send emails with resources and events to keep you informed. When you request a service, attend an event, or complete the contact us form, you are automatically included in our email blasts. If you are a GMAIL user, these may arrive in your “promotions” box instead of your “primary inbox” and you may miss important information. You can prevent this by following the steps shown HERE.

RESOURCE LISTs OF WEBSITES

DOWNLOAD list for Advocacy, Adaptive Clothing and Assistive Technology.

DOWNLOAD list for General SB Info, Housing, Independent Living and Legal Info. 

DOWNLOAD list for Children, Camps, Recreation and Education.

DOWNLOAD list for Driving, Disability, Employment and Financial.

DOWNLOAD list for Teens, Life Transitions and Sexuality.

Peristeen Plus bowel management system info / coloplast

Click this video link: USCC_Peristeen_Plus_pediatric_how_to_use_PM-18748.mp4

For a webinar about Peristeen Plus Adult and Child click this link: https://www.bigmarker.com/coloplast-corp1/Peristeen-Upgraded-What-to-Expect-with-Peristeen-Plus

sPINA bIFIDA aSSOCIATION LIFESPAN BOWEL PROTOCOL

https://www.spinabifidaassociation.org/lifespan-bowel-management-protocol/