The Spina Bifida Association (SBA) is proud to have launched a new initiative aimed at expanding access to care and minimizing health disparities for adults with Spina Bifida. SBA’s partnership with Project ECHO (Extension for Community Healthcare Outcomes) creates a tele-mentoring setting to facilitate case-based learning and real-time access to subject matter experts. Spina Bifida Adult Care ECHO participants will not only gain knowledge but establish a professional network for continued support, learning, and the exchange of ideas. The Spina Bifida Adult Care ECHO is part of SBA’s larger initiative to connect, teach, and mentor healthcare professionals to improve care for adults with Spina Bifida.
The Centers for Disease Control and Prevention (CDC) estimates that each year 1 in 2,758 babies, or 1,500 babies, are born with Spina Bifida. As a result of research, new treatments, surgeries, and federal policies requiring that every child, including those with disabilities, has access to quality care, 60% of the estimated 166,000 people living with Spina Bifida are adults. However, healthcare resources continue to be focused primarily on children. Adults living with Spina Bifida have limited access to quality, specialty care resulting in poorer health and quality of life, inappropriate use of emergency departments, and life-threatening complications.
The Spina Bifida Association is working to change this. Using the ECHO (Extension for Community Healthcare Outcomes) model, healthcare providers from across the country will learn from top Spina Bifida specialists. As more healthcare professionals learn new skills and competencies related to the care of adults with Spina Bifida, access to quality care will expand. Adults with Spina Bifida will receive treatment close to home, from their trusted provider, much more quickly, conveniently, and less expensively than traveling for care.
Participation in the inaugural Spina Bifida Adult Care Echo is complimentary. “We believe this initiative will not only distribute knowledge and best practices, but it will also spur impactful discussion and help pave the way for real change,” said Sara Struwe, President & CEO of the Spina Bifida Association. “This is one way we can help address the very real and dangerous adult care crisis being experienced by adults living with Spina Bifida.”
Click to download the Spina Bifida Adult Care flyer.
The Centers for Disease Control and Prevention (CDC) estimates that each year 1 in 2,758 babies, or 1,500 babies, are born with Spina Bifida. As a result of research, new treatments, surgeries, and federal policies requiring that every child, including those with disabilities, has access to quality care, 60% of the estimated 166,000 people living with Spina Bifida are adults. However, healthcare resources continue to be focused primarily on children. Adults living with Spina Bifida have limited access to quality, specialty care resulting in poorer health and quality of life, inappropriate use of emergency departments, and life-threatening complications.
The Spina Bifida Association is working to change this. Using the ECHO (Extension for Community Healthcare Outcomes) model, healthcare providers from across the country will learn from top Spina Bifida specialists. As more healthcare professionals learn new skills and competencies related to the care of adults with Spina Bifida, access to quality care will expand. Adults with Spina Bifida will receive treatment close to home, from their trusted provider, much more quickly, conveniently, and less expensively than traveling for care.
Participation in the inaugural Spina Bifida Adult Care Echo is complimentary. “We believe this initiative will not only distribute knowledge and best practices, but it will also spur impactful discussion and help pave the way for real change,” said Sara Struwe, President & CEO of the Spina Bifida Association. “This is one way we can help address the very real and dangerous adult care crisis being experienced by adults living with Spina Bifida.”
Click to download the Spina Bifida Adult Care flyer.
Location
Virtual
DateS
October 6, 2022 - April 20, 2023
See full schedule below.
See full schedule below.
Time
1:00 PM - 2:00 PM
Eastern Standard Time
Each session is 1 hour.
Eastern Standard Time
Each session is 1 hour.
CLICK TO DOWNLOAD
If you have questions or would like to request more information contact:
Colleen Payne
[email protected]
Colleen Payne
[email protected]
Topics and Speakers
Speakers may change.
Introduction to ECHO and Adult Care Models for Spina Bifida
Speaker: Ellen Fremion
Speaker: Ellen Fremion
Mental Health / Quality of Life
Speaker: Shannon Bevans and Ellen Fremion
Speaker: Shannon Bevans and Ellen Fremion
Neurosurgery / Pain
Speaker: Jeff Blount
Speaker: Jeff Blount
Bowel Management
Speaker: Michelle Arthur
Speaker: Michelle Arthur
Bladder Management
Speaker: Ellen Fremion
Speaker: Ellen Fremion
Women's Health
Speaker: Tara Harris
Speaker: Tara Harris
Men's Health
Speaker: Courtney Streur
Speaker: Courtney Streur
Mobility / Skin
Speaker: Brad Dicianno
Speaker: Brad Dicianno
Sleep Apnea, Respiratory Failure, Restrictive Lung Disease, Pre-op Assessment (difficult airway)
Speaker: Annise Wilson
Speaker: Annise Wilson
Care Coordination and Navigation / Social Determinants of Health
Speaker: Samuel Garcia
Speaker: Samuel Garcia
Neuropsychology / Self-management
Speaker: Jennifer Queally
Speaker: Jennifer Queally
Aging with Spina Bifida, Foot Care Issues, Arthritis
Speaker: Sam Rosenfeld
Speaker: Sam Rosenfeld
Health Promotion and Preventative Care, Obesity, Physical Activity, HTN
Speaker: Carlie Stein
Speaker: Carlie Stein
Speakers & Advisors
Shannon Bevans
Shannon Bevans is an adult living with Spina Bifida. She holds a Bachelors and Master’s Degree in Social Work and has served on various disability rights committees both at the National and local level. Currently Shannon serves as the Adult Transition Care Coordinator for Orlando Health as well as the Program Coordinator for the Spina Bifida Association of Central Florida. Shannon feels fortunate to a part of a team effort between the Spina Bifida Association of Central Florida and Orlando Health to pioneer an innovative approach to how adults with Spina Bifida are treated.
Brad Dicianno
Dr. Dicianno is the Medical Director of the UPMC Center for Assistive Technology, Director of the UPMC Adult Spina Bifida Clinic, Medical Director and COO of the Human Engineering Research Laboratories (HERL). He also is a Professor, Endowed Research Chair, and Assistant Dean for Medical Student Research at the University of Pittsburgh School of Medicine. His clinical interests are in the areas of spina bifida and assistive technology. His research interests focus on developing and studying interventions targeted to improving health and wellness in individuals with complex disabilities.
Brad also serves as thee Associate Medical Director for the Spina Bifida Association.
Brad also serves as thee Associate Medical Director for the Spina Bifida Association.
Ellen Fremion
Dr. Fremion’s clinical and research interests are in the complex care management for adolescents and adults with chronic conditions from childhood who have physical and intellectual disabilities and transition from pediatric to adult health care. She has a special interest in chronic condition management for adolescents and adults with spina bifida including: improving health outcomes, supporting self-management development, and facilitating patient-centered care plans. Dr. Fremion also sees patients at the Baylor College of Medicine transition medicine clinic for adults (18 and up) with chronic conditions from childhood with physical and/or intellectual disabilities.
Jennifer Queally
Jennifer Turek Queally, PhD, is a neuropsychologist who sees patients in Boston Children’s Spina Bifida Program and the Neuropsychology Program. She has clinical and research interests in the transition into adulthood and self regulation/executive functioning skill development. Much of her clinical work is with children who have neurodevelopmental disorders; many of whom were born with a medical condition or affected shortly after birth, changing their developmental trajectory. She has a strong interest in facilitating functional independence; each child deserves to have a team working with them to help support their development and over time reach their potential.
Carlie Stein Somerville
Carlie Stein Somerville is a Birmingham native and received her doctorate from the University of Alabama at Birmingham in 2013. She completed Internal Medicine and Pediatrics Residency in 2017 and served as Chief resident during her final year of residency. She is now a dual board certified Internist and Pediatrician and an Assistant Professor in the Department of Medicine and Department of Pediatrics. Her clinical duties include seeing patient in a Med-Peds Primary care practice, attending on the inpatient teaching wards and resident clinics. She currently serves as the Program Director to the Med-Peds Residency Program. She is passionate about primary care across the lifespan, care of underserved patients, advocacy and improving transition for teens and young adults with chronic diseases of childhood as they move from the pediatric to adult health system. She is the medical director of a multidisciplinary STEP (Staging Transition for Every Patient) clinic.
Michelle Mravec Arthur
Michelle Mravec Arthur, BSN, RN is an adult living with spina bifida. She worked clinically as a neonatal intensive care nurse before stepping away from the bedside to focus on graduate school. Michelle is currently a predoctoral fellow at the IU School of Nursing in Indianapolis working toward a PhD in Nursing Science. She is passionate about improving quality of life for individuals living with spina bifida. Her research interest is specifically focused on understanding and improving bowel self-management for adults living with spina bifida.
Courtney Shephard Streur
Dr. Courtney Shepard Streur completed her undergraduate studies at Emory University before attending the University of Missouri-Columbia for medical school. She completed her urologic residency training at the University of Alabama-Birmingham. She then completed her pediatric urology fellowship at the University of Michigan. As a part of this fellowship, she obtained a Masters in Health and Health Care Research and trained in health services research. Dr. Streur’s clinical and research interest and expertise lie in the management of patients with congenital urologic conditions such as spina bifida, including helping with the transition to adulthood. Dr. Streur is also a member of the University of Michigan’s Child Health Evaluation and Research Center (CHEAR) and the Dow Division of Health Services Research, where she investigates ways to improve patient education, safety, and experience.
Brian Gutierrez - Advisor
Brian Gutierrez is an adult living with Spina Bifida. He holds a Bachelor of Science in Rehabilitation Services and a Master of Science in Rehabilitation Counseling, and has served on various disability rights committees both at the national and local level. Currently, Brian is a patient advocate and serves on the Spina Bifida Association Adults’ Healthcare Advisory Committee, where he collaborates and engages with members of the community, including patient advocates in identifying essential health services and decrease health information deficits for adults living with Spina Bifida. In addition to Brian’s involvement with the SBA, he serves on the Hispanidad Committee, where he helps Latino families be informed on resources related to Spina Bifida with a cultural sensitivity perspective to enhance their quality of life. Brian shares a deep gratitude to be able to make a difference in the Spina Bifida community through education and advocacy.
Mariya Rowe - Advisor
Mariya Rowe is a adult Living with Spina Bifida and a Self advocate who is currently working with the Spina Bifida Association to make sure that young adults get the proper medical treatment they need and deserve. Mariya is fortunate to be apart of a great team of people to help better the lives of adults with Spina Bifida.
Jeff Blount
Dr. Blount is chief of pediatric neurosurgery and president of the medical staff at Children’s Hospital of Alabama. Dr. Blount participates in the full spectrum of pediatric neurosurgery but has particular academic interest in the surgical treatment of epilepsy in children, spina bifida, transitional care in spina bifida and public health issues in pediatric neurosurgery.
Tara Harris
Speaking on Women's Health.
Annise Wilson
- Dr. Annise Wilson obtained her medical degree at UT Houston/McGovern Medical School. She then completed her residency in Neurology at Northwestern University and remained to complete a Sleep Medicine fellowship. She is currently an Assistant Professor at Baylor College of Medicine where she sees both general neurology and sleep medicine patients. She also serves as an Associate Program Director for the Neurology residency program. Her special interests include sleep disorders during pregnancy and addressing health disparities.
Samuel Garcia
Samuel Garcia is a medical social worker and instructor at Baylor College of Medicine –Transition Medicine Department who assist patients' families transition from pediatric to adult care. His responsibilities include providing community resources and case management to those who have complex medical diagnoses such as Down Syndrome, spina bifida, cerebral palsy, Autism, etc. as well as an intellectual disability. Samuel has over 25 years of social work experience in various settings. He obtained his master's degree at the University of Houston Graduate School of Social Work. Samuel is a Licensed Master Social Worker and a Licensed Chemical Dependency Counselor in the State of Texas.
Sam Rosenfeld
Dr. Rosenfeld is a graduate of the Pennsylvania State University’s School of Medicine where he received numerous honors. He subsequently completed a residency in Orthopedic residency at the University of California, Irvine, graduating in 1982, followed by a Pediatric Orthopedics fellowship at the Rancho Los Amigos National Rehabilitation Center. He subsequently joined the Faculty at CHOC Children’s Hospital in Orange, with a faculty appointment with the University of California-Irvine.
Dr. Rosenfeld is a Diplomate of the American Board of Orthopedic Surgery, and a Fellow of the American Academy of Orthopedic Surgery. He is also a fellow of the American Academy of Pediatrics.
He is currently Associate Clinical Professor of Orthopedics at UC Irvine, and serves as director of the Spina Bifida Clinic, the Muscular Dystrophy Association Clinic, and Spasticity Clinic at CHOC Children’s Hospital. He helped found all those clinics, filling a critical need for the children of Orange County. He also served as the director of the Spina Bifida Clinic at Rancho Los Amigos National Rehabilitation Center for 32 years until 2015.
Dr. Rosenfeld continues to publish in peer reviewed journals over the years with over 20 publications to his credit. He additionally has made scores of scientific presentations at national meetings, and contributed several chapters to text books. Dr. Rosenfeld served as the President of the Medical Staff at CHOC Children’s Hospital and was responsible for the establishment of the Medical Staff Performance Committee.
Dr. Rosenfeld is a Diplomate of the American Board of Orthopedic Surgery, and a Fellow of the American Academy of Orthopedic Surgery. He is also a fellow of the American Academy of Pediatrics.
He is currently Associate Clinical Professor of Orthopedics at UC Irvine, and serves as director of the Spina Bifida Clinic, the Muscular Dystrophy Association Clinic, and Spasticity Clinic at CHOC Children’s Hospital. He helped found all those clinics, filling a critical need for the children of Orange County. He also served as the director of the Spina Bifida Clinic at Rancho Los Amigos National Rehabilitation Center for 32 years until 2015.
Dr. Rosenfeld continues to publish in peer reviewed journals over the years with over 20 publications to his credit. He additionally has made scores of scientific presentations at national meetings, and contributed several chapters to text books. Dr. Rosenfeld served as the President of the Medical Staff at CHOC Children’s Hospital and was responsible for the establishment of the Medical Staff Performance Committee.
Monica Albert Still
Monica Albert Still, RN, BSN is a nurse who sees both sides of the bedside in healthcare. She was born with spina bifida at a time when treatment was in its beginning stages. Having grown up spending time in the hospital she chose nursing as her career. After graduating from Southern Connecticut University with her BSN she began her career in Pediatrics at Yale New Haven Hospital. Her love of teaching patients and their families brought her to home healthcare. She spent the next 30 years working at the bedside to retiring as an administrator of a home health agency. Along the way, she gained expertise in wound care, Medicare and Medicaid regulations, accreditation requirements, and keeping patients at home. She still holds her nursing license.
In her retirement, she turned her attention to advocacy. She volunteers for the Spina Bifida Association by participating in various committees, is an inaugural member of the Adult Advisory Council, and works for the betterment of her peers. She is the Secretary for Disability Rights PA, Board of Directors; on the Patient Advisory Board (SBCAN) for UPMC's Spina Bifida Clinics; is a trainer for TRAIL; is on the committee for Disability Pride Pittsburgh, is on the board of Access Mob Pittsburgh, and is a member of Pittsburgh's United Spinal's Advocacy Committee. She is also in the present cohort of LEND at the University of Pittsburgh. She resides in Western PA and spends her free time with her cats, her daughters, and her granddaughter.
In her retirement, she turned her attention to advocacy. She volunteers for the Spina Bifida Association by participating in various committees, is an inaugural member of the Adult Advisory Council, and works for the betterment of her peers. She is the Secretary for Disability Rights PA, Board of Directors; on the Patient Advisory Board (SBCAN) for UPMC's Spina Bifida Clinics; is a trainer for TRAIL; is on the committee for Disability Pride Pittsburgh, is on the board of Access Mob Pittsburgh, and is a member of Pittsburgh's United Spinal's Advocacy Committee. She is also in the present cohort of LEND at the University of Pittsburgh. She resides in Western PA and spends her free time with her cats, her daughters, and her granddaughter.
Schedule
Schedule is subject to change prior to the start of the program.
2022
Session 1 - October 6, 2022
Session 2 - October 20, 2022
Session 3 - November 3, 2022
Session 4 - November 17, 2022
Session 5 - December 1, 2022
Session 6 - December 15, 2022
2023
Session 7 - January 12, 2023
Session 8 - January 26, 2023
Session 9 - February 9, 2023
Session 10 - February 23, 2023
Session 11 - March 9, 2023
Session 12 - April 6, 2023
Session 13 - April 20, 2023
Session 1 - October 6, 2022
Session 2 - October 20, 2022
Session 3 - November 3, 2022
Session 4 - November 17, 2022
Session 5 - December 1, 2022
Session 6 - December 15, 2022
2023
Session 7 - January 12, 2023
Session 8 - January 26, 2023
Session 9 - February 9, 2023
Session 10 - February 23, 2023
Session 11 - March 9, 2023
Session 12 - April 6, 2023
Session 13 - April 20, 2023