Spina Bifida Association @SpinaBifidaAssn
Working to build a better and brighter future for all those impacted by Spina Bifida. spinabifidaassociation.org Arlington, VA Joined April 2009-
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The Research and Rehabilitation Training Center at MedStar National Rehabilitation Hospital in Washington, DC is recruiting participants for a research study to determine the best dosage of probiotic bladder wash to reduce urinary symptoms. Learn more spinabifidaassociation.org/bladderbuzz/
This week tune in for the next Disability & Health discussion on #LongCOVID. April 30th at 2pm ET, hear from patient advocates on the importance of #PrecisionMedicine and appropriate health care. Register: bit.ly/April30-Panel #JoinAllofUs #AllofUsInclusion
Tune into this new Bladder Buzz podcast episode on neurogenic bowel. This episode explores the differences between neurogenic bowel and a typical functioning bowel, common symptoms, and addresses the crucial aspects of bowel management. buzzsprout.com/1290071/148480…
For some SB pediatric patients, complex movements like running with friends or throwing a ball can be uncomfortable or even impossible. Thankfully, Shriners Children’s motion analysis centers (MACs) are here to help. Learn more here: bit.ly/3UtuxZE. @shriners
The detailed agenda for the 2024 #SpinaBifida Clinical Care Meeting is now available on sbclinicalcaremeeting.org! Thank you to our presenting sponsor, @shrinershosp. Join us in Sacramento, CA May 31-June 1.
Miguel Flores Jr. is an @AllofUsResearch Program advisor. He is a community leader + counselor. His native Mexican heritage and Pascua Yaqui/ Tohono O’odham lineage shape his work with All of Us. Learn more: aahd.us/2024/03/voices… #AllofUsInclusion #VoicesofAllofUs
Can we develop #PrecisionMedicine for Long COVID? Join us April 30 at 2pm ET for a panel on #LongCOVID, Disability + @AllofUsResearch. Hear from patient advocates on the importance of inclusive health research to support people with Long COVID. Register: bit.ly/April30-Panel
ICYMI: Check our April newsletter! mailchi.mp/sbaa/whatshapp…
The Research and Rehabilitation Training Center at MedStar National Rehabilitation Hospital in Washington, DC is recruiting participants for a research study to determine the best dosage of probiotic bladder wash to reduce urinary symptoms. Learn more spinabifidaassociation.org/bladderbuzz/.
DYK 29% of Native Hawaiian and Pacific Islander people identify as having a disability? The goal of @AllofUsResearch is inclusion for all people. To learn more: JoinAllofUs.org/Inclusion. #AllofUsInclusion
You’ve heard of BOTOX® as a cosmetic, but did you know that it can help with the management of Neurogenic Bladder? Check out this Bladder Buzz podcast episode. buzzsprout.com/1290071/101215…
The Spina Bifida Clinical Care Meeting (SBCCM) is a unique forum where you can access all that’s new, evolving, challenging and successful along with unparalleled opportunity to meet, network and collaborate. CMEs and CEUs available. sbclinicalcaremeeting.org
Finding support around mental health can be a sensitive topic for many of us. Join us on March 27 at 2pm ET for a conversation on mental health and disability: us02web.zoom.us/webinar/regist…
When you go to the doctor, you want to get a complete picture of your health. Good care requires good communication. By sharing our health stories, we can improve care for all: youtu.be/OjSX6QsWCW8?si… #JoinAllofUs #AllofUsInclusion
Early bird rates for the 2024 SB Clinical Care Meeting end today, March 8! Register for this unique forum where you can access all that’s new, evolving, challenging and successful along with unparalleled opportunity to meet, network and collaborate. sbclinicalcaremeeting.org
SBCCM Breakout Session Highlight: Weight Management and Related Issues - This presentation will also delve into Spina Bifida research specifically focused on medical professionals’ perspectives regarding weight management. Early bird rates end tomorrow. sbclinicalcaremeeting.org
In addition to great programming, the SBCCM will host sessions for interest groups including: adults with Spina Bifida, care coordinators, therapists, Clinic Care Partners, and social workers. The early bird deadline is THIS FRIDAY, March 8. sbclinicalcaremeeting.org
Join those shaping the future of Spina Bifida. The 2024 Spina Bifida Clinical Care Meeting is the place to access all that’s new and evolving and an unparalleled opportunity to meet, network and collaborate. Early bird registration rates ends March 8. sbclinicalcaremeeting.org
Neurogenic Bladder (NLUTD), occurs when bladder control is impaired due to an injury or disease of the nervous system. There are several types of NLUTD, which can occur alone or in combination. Learn more about the signs and symptoms: spinabifidaassociation.org/wp-content/upl…
The last #TOTH2024 session for day 2 was presented by four young adults with #SpinaBifida. They took us through advocating for yourself in a medical setting, in your personal life, and at Teal on the Hill!
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BREAKING: Minnesota's new state seal has been chosen — and it has a loon! cbsloc.al/3R7QlHo
@UABrehab is proud to be the only spina bifida program in the Southeast region that provides multidisciplinary care for individuals with spina bifida for their entire lifespan. @uabmedicine
Ensuring an effective transition from pediatric to adult care is important for lifelong health outcomes. Transitioning to adult health care is a big step for adolescents and young adults with Spina Bifida. #SBAM2023 #SpinaBifidaAwarenessMonth
Thank You to the amazing Jones ladies on our morning announcements today! They educated our Bobcats about Spina Bifida. We support you McKenna! @FCPS1News #spinabifidaawareness @SpinaBifidaAssn #TealforSB
More living adults than children with Spina Bifida. They need and deserve great care.
#SpinaBifida is not just a pediatric condition. You cannot "outgrow" Spina Bifida, and you can grow old with Spina Bifida. Over 60% of those with Spina Bifida are adults and that number is growing every day. #SpinaBifidaAwarenessMonth #SBAM2023
Come and join us at the Walk-N-Roll for Spina Bifida on Saturday, November 4th, in Houston, TX! Byram proudly sponsors this event hosted by the @SpinaBifidaAssn For event details, please visit hubs.ly/Q023HzLW0. 💙 #WalkNRoll #SpinaBifida #ByramHealthcare
Happy World Spina Bifida and Hydrocephalus Day! The theme of this year’s #wsbhd23 is #accessibility4all, and to us at @neurokids21, that means ensuring all patients with #hydrocephalus and #spinabifida have access to high-quality neurosurgical care! #neurokids #globalneurosurgery
October is #SpinaBifidaAwarenessMonth. We'll light blue tonight to help raise awareness about spina bifida, which occurs in the first month of pregnancy when the spinal column doesn’t close completely. #SBAM2023 Learn more about available resources ➡️ sbanys.org
Nearly two-thirds of the 166,000 people in the U.S. with #SpinaBifida are living to adulthood - a remarkable achievement that would have previously been unimaginable. #SBAM2023 #SpinaBifidaAwarenessMonth
World Spina Bifida and Hydrocephalus Day is today #WSBHD23! This year, we are focused on promoting #AccessibilityForAll! Learn more here: worldspinabifidahydrocephalusday.com/2023-theme
Join the world to celebrate the World Spina Bifida and Hydrocephalus Day (WSBHD)! with the aim to raise awareness and understanding about Spina Bifida and Hydrocephalus. "ACCESSIBILITY FOR ALL"
The amount of times I’ve been asked, “When did you get spina bifida?” Somewhere around the first 28 days after conception, likely. 🤷🏻♂️
Spina Bifida is a birth defect, it's something you're born with. It's not something that develops over time. The severity of #SpinaBifida depends where it occurs on the spina. The higher on the spine the lesion is, the greater the complications. #SBAM2023
#SpinaBifida #SpinaBifidaAwarenessMonth #SBAM2023
Today is #WorldMentalHealthDay. Access to #MentalHealth services is a critical issue throughout the lifespan for children with #SpinaBifida and their parents and other family members. 1 in 5 adults in America will experience a mental illness. #SBAM2023 #SpinaBifidaAwarenessMonth
Important reminder from @SpinaBifidaAssn for #WorldMentalHealthDay Image - light blue graphic with the words "Children and adults with Spina Bifida are at an increased risk of depression & anxiety."
Today is #WorldMentalHealthDay. Access to #MentalHealth services is a critical issue throughout the lifespan for children with #SpinaBifida and their parents and other family members. 1 in 5 adults in America will experience a mental illness. #SBAM2023 #SpinaBifidaAwarenessMonth
My parents didn't know I had #SpinaBifida when I was in my mothers womb because unfortunately my mom did not go for ultrasounds. When I was born thankfully there was a doctor, who became my pediatrician, in the delivery room who knew about spina bifida and knew I had it.
#SpinaBifida occurs in the first 28 days of pregnancy, often before a woman knows she's pregnant. In most cases, Spina Bifida is diagnosed through an ultrasound between 15-20 weeks. #SBAM2023 #SpinaBifidaAwarenessMonth
Spina Bifida is defined by @SpinaBifidaAssn as a type of neural tube defect (NTD) that occurs when a baby’s neural tube fails to develop or close properly. You can learn more about the causes and research on the association website spinabifidaassociation.org
Did you know October is Spina Bifida Awareness Month? Roughly 1 in 3,000 babies are born with this defect that impacts the closing of the neural tube around the spinal cord. This can result in physical or intellectual disabilities. @SpinaBifidaAssn has been helping to build a…
We were honored to participate in the 2023 Walk-N-Roll in Los Angeles recently. This family-friendly one mile Walk-N-Roll event raises funds for Spina Bifida and celebrates the accomplishments of the nearly 200,000 Americans living with the condition. @SpinaBifidaAssn
Just dropped a new episode of the Bladder Buzz Podcast with @mokaneee! 🎙️ Tune in to learn about empowering children with neurogenic bladder through Occupational Therapy. It's a transformative chat you won't want to miss! #Podcast #OccupationalTherapy #BladderBuzz
Check out this episode of the Bladder Buzz Podcast - Beyond the Bladder: Empowering Children with Neurogenic Bladder: The Transformative Role of Occupational Therapy. Listen in here: buzzsprout.com/1290071/132822…
@geek_mommy @SpinaBifidaAssn That's great! Will do. Thank you very much for the information. It is very much appreciated. Have a great evening.
@PaulMiller1313 @SpinaBifidaAssn Absolutely! We've got a treasure trove of neurogenic bladder topics on the Bladder Buzz Podcast. From kids to adults, make sure to check it out and dive into the discussions! 🎙️💡 #NeurogenicBladder #BladderBuzz
Kudos to @jogleeson_ucsd lab members at @SpinaBifidaAssn 'LA Walk N Roll' with #KrishaBagga #IsaacTang #LianaFriedman. Families enroll to find causes and cures by providing spit samples at: neurosciences.ucsd.edu/research/labs/…. Thanks for participating!
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