Spina Bifida Association

Listen in! This episode of the Bladder Buzz Podcast on neurogenic bowel explores the differences between neurogenic bowel and a typical functioning bowel, common symptoms, and addresses the crucial aspects of bowel management. From strategies and goals to challenges and misconceptions, we'll cover it all with Dr Mandy Rounds and Nurse Practitioner Dr. Maryellen Kelly.

Beyond the Bladder: What is Neurogenic Bowel? - Bladder Buzz Podcast This episode on neurogenic bowel explores the differences between neurogenic bowel and a typical functioning bowel, common symptoms, and addresses the crucial aspects of bowel management. From strategies and goals to challenges and misconceptions,...

Just a few more hours left to submit your designs for the 2024 Spina Bifida Awareness Month T-Shirt Contest. Show off your design skills and submit a design today. Voting for the top ten designs will begin September 1. https://www.eventcreate.com/e/sbam2024tshirt

is right around the corner! We're excited for a month of celebration, amplifying voices in our community, and raising awareness about Spina Bifida.

Is there something you want the world to know about Spina Bifida? Are you interested in sharing a short story, quote, or picture about what you want others to know about Spina Bifida? This could include what you might want a teacher, neighbor, family member, or your local legislator to know. It's a moment for you to let others know about Spina Bifida. Use this form to share and you may be featured on our social media channels!

What Do You Want the World to Know About Spina Bifida? Share what you want the world to know about Spina Bifida this awareness month!

It’s August, and that means that members of Congress are back in their home states and districts. This is a great time to try to connect with them and advocate for the Spina Bifida community!

While their schedules may be full, it doesn’t hurt to try and find a time to talk your representative or senators. Check out this blog for tips to meet with your members of Congress at their local office.

Meet With Your Members of Congress at Their Local Office - Spina Bifida Association It's August, and that means that members of Congress are back in their home states and districts. This is a great time to try to connect with them and advocate for the Spina Bifida community!

Our Walk-N-Roll Your Way Program is designed to allow those who are unable to attend one of our scheduled Walk-N-Roll events to host, attend, and fundraise at their own event.

Check out our Q&A interview with Team Captain, Maranda Jones, as she walks you through the steps of organizing your own event: http://bit.ly/3MdrIXB

Ready to roll? Let’s make it happen together!

Check out our Walk-N-Roll Your Way resources on our website for more tips and tools at www.walknrollforsb.org

Happening today! Achieving an effective bladder and bowel management routine is an indispensable step towards self-management and independence for children with Spina Bifida. Join us today, August 20, at 7PM ET/ 4PM PT for our next installment in the New Voices for SB series - Empowering Independence: Bowel & Bladder Care for Children.
In this session, the experts will show parents how to teach their children to become comfortable managing their bladder & bowel management program on their own. This session is presented by Wellspect.
Register today! https://give.sbaa.org/event/new-voices-for-sb-empowering-independence-bladder-and-bowel-care-for-children/e605127

Scientists continue to research the many ways that COVID-19 affects our bodies. A recent study by the All of Us Research Program tests new ways to assess COVID risk. More risk means a greater chance of getting sick. This can often differ based on a person's background. The researchers used genetic markers to study risk. Learn more about how genetics could play a role in determining the risk of developing severe COVID-19 symptoms in this : https://allofus.nih.gov/news-events/research-highlights/all-us-helps-link-health-conditions-with-severe-covid-risk

🌟 Create Impact with Your Donor-Advised Fund! 🌟

Support the Spina Bifida community by recommending a grant to the Spina Bifida Association through your Donor-Advised Fund (DAF). Your generosity fuels resources, advocacy, and hope for those affected by Spina Bifida.

Ready to make a difference? Contact your advisor today and recommend SBA as your charity of choice. Together, we can change lives!

How to Give:
Talk to Your Advisor: Contact your financial advisor, tax professional, or local community foundation.
Recommend a Grant: Choose the Spina Bifida Association as a recipient of your generosity.
Change Lives: Your support helps provide resources, advocacy, and hope to those affected by Spina Bifida.

with the University of Alabama want to learn how sexual education, experiences, and practices of individuals with Spina Bifida might relate to their current sexual and reproductive health. Your participation in this study will help inform health care providers on how to best provide sexual health and information to their patients with Spina Bifida. https://redcap.link/SRHinSB

Election Day is Tuesday, Nov. 5. Are you sure you are registered to vote?

Please take a minute to double check at the link below. Many states have updated their voter rolls, and your name may have been taken off your state's list.

We encourage everyone in our community to exercise this fundamental right. Your voice matters!

Check Your Voter Registration Status - Vote.org It takes less than 30 seconds to check your registration status with our free 50-state tool. And if you're not registered, we'll help you take care of that too. Fast, free, secure, non-partisan.

Meet Eric Tobin, dedicated Walk-N-Roll Ambassador representing the city of Los Angeles and the Spina Bifida Association of California! Register for a Walk-N-Roll near you at www.walknrollforsb.org and follow National Walk-N-Roll for Spina Bifida for more updates!

We're thrilled to introduce you to Eric Tobin, our dedicated Walk-N-Roll Ambassador representing the vibrant city of Los Angeles! 🎉

Eric lives in LA and has worked in the music industry for 20+ years and loves being a part of artists' careers and growth. He has a passion for traveling, especially when it includes adventure and eating. He loves cooking and, of course, working with and volunteering his time with the Spina Bifida Association.

Eric joined the SBA of California Chapter in 2018. He states "From that first Walk-N-Roll, I went on to take a larger and deeper role on the SBA national team and this year will be my 7th year taking part. I now co-chair the event and have added my own 'walk your way' adventures to Peru and Nepal. Raising money for SBA is incredibly important to me and the community we serve, the mission and goals can only be reached with our work and contribution." When asked what he suggests for those who are new to or intimidated by fundraising, Eric states "Just ask anyone and everyone; you have nothing to lose and nothing to be ashamed of - the cause is good and important. $5 is more than $0 and each dollar helps us progress our mission."

We are so inspired by Eric's determination. Stay tuned for more inspiring stories!

Achieving an effective bladder and bowel management routine is an indispensable step towards self-management and independence for children with Spina Bifida. Join us August 20 at 7PM ET/ 4PM PT for our next installment in the New Voices for SB series - Empowering Independence: Bowel & Bladder Care for Children.

In this session, the experts will show parents how to teach their children to become comfortable managing their bladder & bowel management program on their own. This session is presented by Wellspect.
Register today! https://give.sbaa.org/event/new-voices-for-sb-empowering-independence-bladder-and-bowel-care-for-children/e605127

DYK - When the weather is hot, certain medications can affect your sensitivity to heat? Learn more about the effect of the medications you take. This can help you avoid heat-related illness this summer.

With All of Us Research, we learn more about how genetics and the environment affect our health. Better research can help us to find the best medications for our bodies, in every season. Be part of the future of personalized medicine: https://bit.ly/AllofUsInclusion-FB

Exciting News! Our t-shirt design contest for Spina Bifida Awareness Month in October is officially open for submissions!

We’re accepting design submissions starting today until August 23rd. The winning design will be featured on this year’s Spina Bifida Awareness Month t-shirt and proudly displayed in our online store.

To participate, follow the link to read all the guidelines and find out how and where to submit your artwork. Don't miss out on this incredible opportunity to showcase your talent and support the Spina Bifida community. https://www.eventcreate.com/e/sbam2024tshirt

Meet Dr. John Wiener, a dedicated supporter of the Spina Bifida Association through his Donor-Advised Fund (DAF)!

Dr. Wiener has been making a significant impact in the Spina Bifida community by leveraging the flexibility and tax benefits of a DAF to support our mission.
We are incredibly grateful for Dr. Wiener’s generosity and commitment. His support helps us continue providing essential services, advocacy, and resources for individuals and families impacted by Spina Bifida.

If you have any questions about Donor-Advised Funds (DAFs), reach out to Jenna Brown, National Director of Development, [email protected]

Gather all your friends and family to create your Walk-N-Roll team! There are no limits to the number of people you can have join. We invite you to be part of this amazing community dedicated to building a better and brighter future for all those impacted by Spina Bifida. Learn more and register at www.walknrollforsb.org.

Want to learn more about this online network of wellness programs, health experts, and related resources? Register for tomorrow's review of the NCHPAD Connect program!
https://youtu.be/5tGIJUX1-yo?feature=shared

Register now: https://give.sbaa.org/event/how-can-you-benefit-from-nchpad-connect/e604737

What is NCHPAD Connect? Level up your health with NCHPAD Connect! It's your ticket to a healthier future. Get ready to meet top-notch experts, like nutritionists, personal trainers,...

This Thursday, August 8, join for a virtual tour of the NCHPAD Connect programs. NCHPAD Connect provides access to individualized programs and personalized resources on mindfulness, exercise, nutrition, diet and weight management – all at no cost. They will even send those who register the equipment they need to fully participate in their programs!
Want to learn more? Be sure to join the NCHPAD Connect experts for an in-depth review of this unique program. Register today! https://give.sbaa.org/event/how-can-you-benefit-from-nchpad-connect/e604737
If you're unable to attend live, register to receive the recording.

We're excited to announce we will be picking one person's artwork to be featured on this year's Spina Bifida Awareness Month t-shirt AND it will proudly live in our online store!

Think you've got a winning design idea? Follow the link to read all guidelines and find out how and where to submit your artwork. Submissions open August 12th.
https://www.eventcreate.com/e/sbam2024tshirt

We can't wait to see your creativity shine!

Achieving an effective bladder and bowel management routine is an indispensable step towards self-management and independence for children with Spina Bifida. Join us August 20 at 7PM ET/ 4PM PT for our next installment in the New Voices for SB series - Empowering Independence: Bowel & Bladder Care for Children.

In this session, the experts will show parents how to teach their children to become comfortable managing their bladder & bowel management program on their own. This session is presented by Wellspect.
Register today!
https://give.sbaa.org/event/new-voices-for-sb-empowering-independence-bladder-and-bowel-care-for-children/e605127

Connect with your local community at a Walk-N-Roll! Check out the dates and locations below. Don't see an event near you? Check out our Walk-N-Roll Your Way Program. Go to walknrollforsb.org to register today.
Fort Worth, TX: Sept. 7
Bowie, MD: September 22 - DMV Walk-N-Roll Your Way
Charleston, SC: Sept. 28
Louisville, KY: Sept. 28 & Oct. 5
Los Angeles, CA: Sept. 29
Oklahoma City, OK: Oct. 5
Sacramento, CA: Oct. 5
Des Moines, IA: Oct. 6
Nashville, TN: Oct. 12
Atlanta, GA: Oct. 19
Greensboro, NC: Oct. 19
Lowell, AR: October 26- Walk-N-Roll Your Way
Orlando, FL: Nov. 2
Houston, TX: Nov. 9
Phoenix, AZ: Nov. 2

What is a Donor-Advised Fund (DAF)?

A Donor-Advised Fund, or DAF, is like a charitable savings account. You can contribute to it as often as you like, receive an immediate tax deduction, and then recommend grants from the fund to your favorite charities, like the Spina Bifida Association (SBA), over time. To set up a DAF, you can reach out to your financial advisor, tax professional, or a community foundation in your area. They can provide guidance and help you get started.

By using a DAF, you can make a lasting impact on the Spina Bifida community.

Contact Jenna Brown, National Director of Development, [email protected], for more information.

Exciting news is on the horizon! We're gearing up for something special in celebration of Spina Bifida Awareness Month, and we can't wait to share it with you. Stay tuned and keep an eye out for more details – you won't want to miss this!

One medical complication that can occur with Neurogenic Lower Urinary Tract Dysfunction (NLUTD) is a urinary tract infection (UTI). Learn more from Medstar Health here: https://bit.ly/4dgrACe

www.spinabifidaassociation.org

August 8, join us on a virtual tour of the NCHPAD Connect programs. NCHPAD Connect provides access to individualized programs and personalized resources on mindfulness, exercise, nutrition, diet and weight management – all at no cost. They will even send those who register the equipment they need to fully participate in their programs!

Want to learn more? Be sure to join the NCHPAD Connect experts for an in-depth review of this unique program. Register today! https://give.sbaa.org/event/how-can-you-benefit-from-nchpad-connect/e604737

If you're unable to attend live, register to receive the recording.

Ask the Expert: Urinary Incontinence and Adults with .
🗓️ TOMORROW, July 30
🕖 7PM ET/4PM PT
Register ➡️ https://give.sbaa.org/event/ask-the-expert-urinary-incontinence-and-adults-with-spina-bifida/e599987

Can't attend live? Register to receive the recording.

Recording now available! Dr. Kaufman focused on changes in bladder management as one ages, bladder management options, and how to keep one's kidneys safe. She also discussed how to recognize urinary tract infections (UTIs), particularly when they manifest without pain, and how often to check for UTIs in order to prevent infections that are difficult to treat. She also explained common misconceptions about bladder health and aging. Watch the recording: https://youtu.be/Z9AVERBgv8k?feature=shared

Register for the follow up question and answer session happening Tuesday, July 30 at 7PM ET/4PM PT. Learn more and register here https://give.sbaa.org/event/ask-the-expert-urinary-incontinence-and-adults-with-spina-bifida/e599987

Third-party fundraising is when passionate individuals or groups organize events or initiatives to raise funds for a cause they care about. Instead of being directly organized by the nonprofit, these efforts are driven by community members who want to make a difference.

For SBA, third-party fundraisers are crucial. They expand our reach, bring new supporters into the fold, and provide essential funds that help us improve the lives of those living with Spina Bifida. These community-led efforts amplify our impact and create a stronger, more engaged network of advocates and supporters.

Click here to start your own today! https://bit.ly/3ylzawm

With the 34th anniversary of the Americans with Disabilities Act, SBA celebrates the significant strides our country has made towards inclusion and equality for individuals with disabilities. This landmark legislation has opened countless doors, ensuring access, opportunity, and dignity for millions. However, the journey is not complete. SBA remains committed to breaking down remaining barriers, fostering a truly inclusive society where everyone can thrive, and ensuring that the promise of the ADA is fully realized for all.

ADA National Network (adata.org) 1-800-949-4232