Tethered Cord Support Alliance

José Hinojosa, MD, PhD

Dr. José Hinojosa is an internationally recognized pediatric neurosurgeon at SJD Barcelona Children’s Hospital in Spain, with decades of experience in the diagnosis and surgical treatment of complex neurological conditions in children. He earned his medical degree from the University of Valladolid, completed his neurosurgical training at Hospital Ramón y Cajal in Madrid, and obtained his doctorate in Medicine from the Complutense University of Madrid.Throughout his career, Professor Hinojosa has held leadership positions at several major pediatric hospitals in Spain. His clinical and research interests include tethered spinal cord, occult spinal dysraphism, spinal cord lipomas, and other congenital conditions affecting the nervous system. He has contributed to the medical literature on these conditions, including publications addressing occult spinal dysraphism, conus medullaris lipomas, tethered cord, and lumbosacral malformations.Professor Hinojosa has also made significant contributions to the international pediatric neurosurgical community. Through his clinical expertise, scientific contributions, and international leadership, Professor Hinojosa brings valuable experience in pediatric spinal cord disorders and congenital neurological conditions to the Tethered Cord Support Alliance Medical Advisory Board. He is deeply committed to caring for children and supporting families of children navigating complex neurosurgical conditions.

Rajiv Iyer, MD

Dr. Rajiv Iyer is an Associate Professor of Neurosurgery and a dual fellowship-trained pediatric neurosurgeon specializing in pediatric spinal disorders, including tethered cord syndrome, complex spinal conditions, and spasticity. He completed his neurosurgical residency and chief residency at The Johns Hopkins Hospital, followed by a pediatric neurosurgery fellowship at the University of Utah and Primary Children’s Hospital. He subsequently completed an advanced fellowship in pediatric spinal deformity at Columbia University Medical Center, gaining specialized training in both the neurosurgical and orthopedic approaches to spinal care in children.Dr. Iyer’s dual expertise in neurosurgery and orthopedic spinal deformity care provides a distinctive perspective on complex pediatric spinal conditions. His clinical experience includes tethered cord syndrome and recurrent tethered cord syndrome, for which he offers advanced surgical approaches, including spinal column shortening. He also treats spina bifida, craniocervical disorders, and other congenital and acquired conditions affecting the spine and nervous system.Actively involved in national research initiatives, Dr. Iyer is committed to advancing the understanding and treatment of pediatric spinal disorders and improving the safety of complex spinal surgery. His specialized training and experience contribute valuable expertise to the Tethered Cord Support Alliance Medical Advisory Board.

Kara Saperston, MD, PhD

Jeffrey Greenfield, MD, PhD

Dr. Jeffrey Greenfield is a Professor of Neurological Surgery in Pediatrics, Vice Chair for Academic Affairs, and director of the residency program at Weill-Cornell Medical Center. Dr. Greenfield has distinguished himself as both a surgeon and a scholar in his work on complex spinal dysraphism and tethered cord syndrome, as well as related congenital conditions. He founded and directs the Chiari CARE and Tethered Cord CARE Program at Weill-Cornell, which provides comprehensive multidisciplinary care for patients with Chiari malformation, tethered cord, syringomyelia, and craniocervical conditions. His work on tethered cord syndrome, including targeted research and controlled-trial studies, is helping clarify what we know about surgical outcomes in patients with and without classic imaging findings and providing important data for guiding decisions in ambiguous or borderline cases. Dr. Greenfield believes in continuing care for patients with pediatric neurosurgical conditions throughout the lifespan, and is widely recognized among the top doctors in neurosurgery today.

Susan Chalela, MPT

Susan is the founder of The Chalela Physical Therapy Institute for EDS and Cervical Instabilities and an internationally recognized physical therapist with more than 30 years of clinical experience. She earned a Master of Physical Therapy degree from the Institute of Physical Therapy in St. Augustine, FL, and specializes in tethered cord syndrome, upper cervical instability, Ehlers-Danlos syndrome (EDS), and hypermobility disorders, with particular expertise in complex neurological and connective tissue presentations. Susan has devoted much of her practice to treating individuals with occult tethered cord syndrome (OTCS), focusing on the relationship between spinal cord tension, cervical instability, and whole-body biomechanics. Her innovative approach integrates biomechanics and neuroplasticity to address the root causes of instability and improve long-term function. A national and international lecturer, Susan coauthored the recent international consensus recommendations for conservative care of cervical instability, teaches the EDS ECHO Finding Functional Foundations (FFF) course and is a founding member of the EDS Center of Excellence at the Medical University of South Carolina. Living with hypermobile EDS herself, she brings both clinical depth and personal insight to the tethered cord community.

Linda Bluestein, MD

Dr. Linda Bluestein is a Mayo Clinic-trained, board-certified anesthesiologist who specializes in hypermobility disorders and related complex conditions. Through her practice, Hypermobility MD, she cares for patients with hypermobile Ehlers-Danlos syndrome, Hypermobility Spectrum Disorders, POTS, mast cell activation, chronic pain, and associated conditions, including tethered cord syndrome.As a lifelong dancer also diagnosed with hEDS, Dr. Bluestein combines medical expertise with firsthand understanding of the challenges faced by patients with hypermobility-related conditions. She is an internationally recognized educator and advocate, hosting the Bendy Bodies Podcast and publishing The Bendy Bulletin to advance awareness and improve care. She is a well-known lecturer on the topic and contributes to research and professional education.Dr. Bluestein is passionate about empowering patients through education, collaborative care, and a deeper understanding of their health. She brings valuable expertise in hypermobility and associated conditions to the Tethered Cord Support Alliance Medical Advisory Board, providing an important perspective regarding the complex and overlapping symptoms experienced by many individuals with this condition.

Petra M. Klinge, MD, PhD

Dr. Petra Klinge is an internationally respected neurosurgeon, researcher, and clinician whose work has profoundly advanced the understanding and treatment of tethered cord syndrome and related disorders. Dr. Klinge is a Professor of Neurosurgery at The Warren Alpert School of Medicine at Brown University and practices at Rhode Island Hospital and Hasbro Children's Hospital, where she cares for both pediatric and adult patients with complex spinal and cerebrospinal fluid disorders. She is widely recognized for her expertise in tethered cord syndrome, including occult tethered cord, syringomyelia, chiari, and other related conditions in which she has helped shape both clinical practice and ongoing scientific inquiry. Dr. Klinge is an active member of the American Association of Neurological Surgeons and the Congress of Neurological Surgeons. A respected leader in academic neurosurgery, she has been appointed by the National Academy of Sciences and served in a 2022 committee to establish disability criteria for neurological conditions in patients with Ehlers-Danlos Syndrome and Marfan Syndrome as a nationally acknowledged expert for spinal cord disorders and tethered cord syndrome. Dr. Klinge's research has focused on the pathophysiology of tethered cord and related conditions, with a strong emphasis on understanding mechanisms of neurological injury and translating those insights into improved surgical decision-making and meaningful clinical outcomes, particularly in complex and historically under-recognized presentations such as occult tethered cord.

Patricia J. Stott DPT, MS, ATC, CHT

Patricia Stott treats primarily those with HSD/EDS and those with neurovascular conditions at her own practice, Elevation Wellness, outside the Denver metro area in Colorado. Also trained in functional and herbal medicine, she works on health and wellness through holistic strategies with these patients, both in person and through telehealth appointments. With an extensive background in orthopedics, she now focuses on interventions for the autonomic nervous system, neural manipulation, visceral manipulation, vascular manipulation, fascial counterstrain, and craniofacial work to treat the more complicated patients who have not fared well in standard rehab settings. Her specialties with this population include upper cervical instability, vascular compressions, and spinal cord tethering.Patty has contributed to publications in peer reviewed literature on HSD/EDS, upper cervical instability, and tethered cord syndrome. She has authored a number of books on HSD/EDS and coexisting conditions, including a medical memoir, and creates educational content for rehabilitation professionals.

Danielle Jolliff, PT, CAFS

Danielle is a physical therapist with 15+ years of experience, undergraduate degree from Ohio University, and a Master of Physical Therapy from Walsh University. She has extensive advanced training in biomechanics, functional movement taping, myofascial cupping, manual therapy, ACL injury prevention, and connective tissue disorders. Her daughter was diagnosed with tethered cord syndrome at age 11. Navigating her daughter's tethered cord syndrome diagnosis and surgery has given Danielle both clinical expertise and lived experience as a caregiver to understand some of the challenges of rare disease diagnosis, complex medical decisions, and managing chronic conditions. Inspired by this journey Danielle created a physical therapy practice dedicated to patients with complex conditions—providing the time, specialized care, and understanding needed to improve function, manage symptoms, and enhance quality of life. She is committed to advancing awareness and education within the medical community about tethered cord syndrome to improve care and quality of life for patients and families.

Rebekka Smith

President

Rebekka is passionate about helping everyone reach their full potential through access to appropriate healthcare interventions, experiential learning, and high-quality accessible information. She is an educational consultant, writes health-related academic articles and educational materials, and has spoken at various regional and national conferences. Rebekka also has experience with small business management, parent and family mentorship programs, and programming for large events. She earned a bachelor’s degree in Recreation Therapy from Brigham Young University and a Master’s in Curriculum and Instruction from Western Governor’s University. Rebekka enjoys backpacking, raising llamas, directing musicals for local youth, and spending time with her husband and four children, one of whom lives with tethered spinal cord syndrome and multiple related physical challenges.

Melanie Ramsay

Vice President

Melanie is a community organizer who aims to push the needle of proper tethered cord care forward with each patient interaction. Committed to both scientific & personal connections, she encourages the wildly misunderstood adult tethered cord population to offer their experience, wisdom & hope to others living with the condition. In March of 2023, she started “Tethered Tuesdays” a public weekly Instagram story series on her recovery from tethered cord release surgery. In September of 2023, Melanie launched a live version of Tethered Tuesdays, a virtual support group for adults living with TC. The group created a resource document & clinician database that continues to guide others as they navigate their own complex care. Melanie is a broadcasting & agency producer with 25+ years of industry experience. She earned a bachelor’s degree from Columbia College Chicago in Television Production/Direction. When she isn’t making videos with her pals, you can find her hiking the local trails.

Courtney Morales Hofmann

Treasurer

15-year entrepreneur; she has run multiple start-ups in the staffing industry and tech industry. Courtney and her son went viral in 2023 for solving his back problems utilizing Chat GPT. Since then, Courtney has spoken at several events on AI in medicine. Courtney has won Entrepreneur of the Year from the Michigan Hispanic Chamber of Commerce and was recently nominated for the Latina awards as a top connector.

Kaleigh Best

Secretary

Kaleigh Best is a dedicated advocate for individuals with Tethered Cord Syndrome and their families. After years of searching for answers to her daughter’s complex symptoms and encountering frequent dismissal, Kaleigh and her family pursued care internationally. Her daughter experienced meaningful relief following tethered cord release surgery in Barcelona, Spain, while continuing to navigate ongoing care needs locally. As Secretary of the Tethered Cord Support Alliance and a Peer Support Mentor, Kaleigh is committed to supporting families through empathy, practical insight, and a deep respect for each family’s unique journey. She is passionate about improving recognition and understanding of Tethered Cord Syndrome and ensuring families feel heard, supported, and empowered. Kaleigh lives in Kelowna, British Columbia, Canada with her husband and daughter. Kaleigh enjoys her work helping students and teachers understand their unique brain and how they can learn best in her role as a School Psychologist. She also enjoys time outdoors with her family as well as quieter moments with a cup of tea and a good book or puzzle.

Tevya Betzold

Compliance Officer

Tevya, a California native, earned a bachelor’s degree in science and a master’s in public administration graduating with honors. She is published in the Journal of Animal Science and has lectured around the country on different topics relating to her volunteer and humanitarian work. Tevya has worked in the nonprofit and for-profit space for more than a decade. Her expertise includes regulatory compliance, grant administration, nonprofit best practices, Human Resources, strategic partnerships, audit supervision, and corporate risk management. In addition to her domestic nonprofit experience where she managed companies ranging in size from start-ups to >$60 million in AUM, she also advised organizations in Canada, Peru, Mexico, and Thailand. This allowed her to understand the unique aspects of business and compliance facing leaders over multijurisdictional corporations. Tevya’s passion for strengthening individuals and building resilient organizations was born out of personal struggle. Shortly after relocating their family and dairy consulting business to Southern Utah, her husband passed away, leaving her to manage their 40-acre family farm and provide for their four children. When faced with the unthinkable, she found herself navigating life insurance, taxes, transfer of assets, regular income, and planning for retirement alone. This inspired her to pursue a career in private wealth management. In 2024, after nearly a decade as a widow, Tevya’s life took an unexpected, happy turn when two cousins from Idaho introduced her to Fred Betzold, also a widower. They were married and have purchased a home on a ten-acre apple orchard in Weiser, Idaho, where they are writing the next chapter in their lives together. She has reclaimed her favorite roles as a full-time homemaker to their (combined) 7 children and their spouses, grandmother to 3 grandchildren, and part-time farmer/sheep herder.

Kimberly Orrison

Newsletter Coordinator

Kimberly is a lifelong tethered cord patient who spent years navigating symptoms before having the language or a diagnosis to explain them. Her lived experience shapes her compassion for others living with complex, often misunderstood conditions. For over a decade, Kimberly has owned and operated a photography business, where her work has centered on capturing real life as it unfolds – connection, emotion, and the beauty found in ordinary moments. Creativity has long been a steady presence in her life, offering both expression and grounding through seasons of uncertainty. After tethered cord surgery in October 2024, Kimberly felt a shift in her health and perspective, inspiring her to pursue patient advocacy and expand understanding of tethered cord syndrome with the goal of helping shorten diagnostic timelines and reduce the isolation many patients face. In addition, Kimberly supports the daily operations of her family’s cybersecurity and IT business in a part-time administrative role. Across all areas of her life, she values care, and connection, and is committed to supporting education, awareness, and patient advocacy efforts that help individuals and families feel seen, believed, and less alone.

Bethany Jensen

General Editor

Bethany grew up in a family of readers and writers, surrounded by books and imagination. She is currently studying English at Brigham Young University-Idaho. Bethany hopes to grow in her leadership and communications skills so she may better interact with the people around her and make a positive influence in the world. Bethany loves stargazing, theatre, and painting, as well as picking up a good book on the weekend.