Spina Bifida Association of America

An #Advocacy Update from our COO, Michael Wood.

July is #DisabilityPrideMonth! Disability Pride Month is a time to honor the history, achievements, and experiences of the disability community. It is celebrated in July in recognition of the signing of the Americans with Disabilities Act (ADA) in July 1990. This year marks the 34th anniversary of the passage and there is still so much work to be done.

The Spina Bifida Sequencing Consortium, based out of the University of Southern California, is excited to share their latest study "Risk of meningomyelocele mediated by the common 22q11.2 deletion" with the Spina Bifida research and health care community. This is a result of a collaborative effort between the Spina Bifida Sequencing Consortium, clinicians worldwide, the SBA, and participating families to learn more about the genetics of spina bifida. Please see the publication here:  https://lnkd.in/eGvsDrGn. If you know families who would like to be assessed for this new genetic finding, please see the study and share the enrollment form here: https://lnkd.in/efxVQf2h Thank you to all families and collaborators for your invaluable contributions and we are excited to continue discovering more about the genetic causes of Spina Bifida together!

The All of Us Research Program wants to speed up health research breakthroughs. To do this, they are asking one million or more people to share health information. In the future, researchers can use this to conduct thousands of health studies and improve health for all of us. Learn more here: https://lnkd.in/dM5Y_7dJ

People with #disabilities deserve to know where each major presidential candidate stands on important issues that matter to them. But when is the last time you heard a #presidentialdebate focus on disability policy? Thanks to the American Association of People with Disabilities (AAPD) for sending this letter to CNN. AAPD has three recommendations for the upcoming presidential debate, which we at the Spina Bifida Association of America fully endorse: 1. Ensure disabled voters can access your information; 2. Ensure disabled voters can make informed decisions; and 3. Follow inclusive and respectful best practices. You can read the letter here for yourself:

One of the greatest healthcare issues adults with #spinabifida, #hydrocephalus, #tourettes, and other #disabilities face is the “care cliff” they experience as they transition out of pediatric care. In an effort to generate more federal support to address this challenge, Sara Struwe, President & CEO of the Spina Bifida Association of America (SBA), facilitated a panel discussion of clinical experts and patient advocates on pediatric-to-adult healthcare transition at a congressional briefing June 20 on Capitol Hill. More than 50 congressional staffers, representing members of the U.S. Senate and House of Representatives, attended the briefing, co-hosted by the congressional Spina Bifida, Hydrocephalus, and Tourette Syndrome caucuses, along with the National Partnership for Pediatric to Adult Care Transition (NPPACT). NPPACT is a national coalition advocating for federal programs, policies, and funding to address the adult care cliff people with disabilities face. SBA, the Hydrocephalus Association, the Tourette Association of America, and the Arthritis Foundation—all members of NPPACT—supported the briefing. Panel participants included Annie Kennedy, Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation for Rare Diseases; Domonique Robinson, a patient advocate with Spina Bifida and Hydrocephalus; and Dr. Erin Teeple, a pediatric and adult colorectal surgeon at Children’s National Hospital. As an initial step for this new coalition, NPPACT is working to get language inserted in the FY2025 appropriations bill that funds the U.S. Department of Health and Human Services that would require the major health-related federal agencies to report to Congress on what they are doing to “support and facilitate continuity of care for medically-complex and/or special needs adolescents who are aging out of the pediatric care system.” By requiring agencies to report their efforts to Congress, our hope is to get more federal attention on transition and also to better understand where gaps in federal support exist so we can begin to address them. If your organization is interested in joining NPPACT, please let us know, or go to nppact.org for more information.

Sara Struwe, President & CEO of the Spina Bifida Association of America, will be moderating a panel discussion on the challenges of pediatric-to-adult care transition for people with disabilities like #spinabifida and #hydrocpehalus as part of a congressional briefing Thursday, June 20 at 4 p.m. EDT in Room 2044 of the Rayburn House Office Building. The congressional briefing is being co-hosted by the Spina Bifida and Hydrocephalus congressional caucuses. All members of Congress and/or their staff are welcome to attend. RSVP here https://lnkd.in/eWEGYR8Y SBA and the Hydrocephalus Association, lead sponsors of the congressional briefing, recently joined forces to create the National Partnership for Pediatric to Adult Care Transition (NPPACT). NPPACT a multi-disciplinary group of stakeholders committed to advocating for federal programs, investments, and policies to improve the transition from pediatric to adult care for young adults living with serious, life-threatening, and disabling conditions that were initially diagnosed, treated, and managed in childhood. Currently, NPPACT is urging Congress to include language in the FY2025 annual appropriations bill for the Departments of Labor, Health & Human Services, Education, and Related Agencies that would require all major health-related federal agencies to survey and identify gaps in our nation’s federal policies, investments, and programs supporting the continuity of care for young adults as they age out of the pediatric specialty care system. Gathering this data is a critical step in working with the federal government to improve the nation’s healthcare transition infrastructure. SBA is focused on ensuring that everyone with Spina Bifida has access to high quality, affordable healthcare. One way we’re doing that is by mobilizing like-minded organizations to press for federal policy changes that would put more resources into addressing the adult care cliff that people with Spina Bifida face when they age out of pediatric care.

Denmark has a tradition of fostering fruitful dialogues by uniting diverse stakeholders to address shared concerns. In that spirit, Ambassador Jesper Møller Sørensen hosted a roundtable discussion June 11 at the Danish embassy dedicated to Achieving Health Equity for People with Disabilities. Sara Struwe, President & CEO, had the chance to discuss how the lack of qualified health care and other health inequities and disparities significantly affect the quality of life and functional abilities of individuals with Spina Bifida. Disability advocate Peter Thomas moderated a thought-provoking discussion among experts from various sectors, including government officials, clinicians, patient advocates and industry leaders. Together, they explored ways to enhance policies and access to essential supports for individuals living with disabilities.

When you participate in All of Us Research, you get to learn about your health as the program does! You might choose to receive a report about your DNA Results to learn more about how your body might react to certain medicines. You might participate in new study opportunities. Learn more about All of Us at: https://lnkd.in/gQZWEzg3 #AllofUsInclusion #JoinAllofUs #Disability

There is an extreme care-cliff when it comes to transitioning from pediatric to adult care for those living with #SpinaBifida. The National Partnership for Pediatric to Adult Care Transition (NPPACT) is a new national coalition fighting to make sure that every individual with a disability has access to quality, affordable healthcare when they age into adulthood. Together with the Hydrocephalus Association and other nonprofit organizations, we are hosting a congressional briefing on pediatric-to-adult transition June 20 at 4 p.m. EDT in Rayburn House Office Building, Room 2044. We're asking all #advocates to reach out to their members of Congress and ask them to attend this important happy hour briefing. Send them a message directly here https://lnkd.in/eWm4ea2n.