Board of Directors and Staff

Marie is a civil engineer, project manager, and dedicated volunteer who has been proudly serving the Spina Bifida Association since 2017, and the SBA of Colorado before that. What began as a commitment to giving back has evolved into a profound leadership journey, allowing Marie to strengthen her professional project-management expertise and develop critical organizational skills while making a tangible difference. Dedicated to strengthening the community, she continues to leverage her professional and volunteer growth to champion the association’s vital programs and outreach.

James Armijo is CEO of Inktavo, a SaaS platform for the printing and decorating industry formed from the merger of Printavo and InkSoft. He previously served as CEO of Smartcare, leading its growth, acquisitions, and exit to Vanco. James also advised Global Healthcare Resource, driving tech strategy and M&A. Earlier, he was COO at PatientPop, VP at Kareo, and held leadership roles at 8×8, where he led a major restructuring. He began his career as a research analyst at Engemann Asset Management, focusing on SaaS companies. James holds a BA in Diplomacy and World Affairs with an Economics concentration from Occidental College. Across roles, he’s scaled teams, raised capital, and driven innovation in tech-enabled services.

Sheliah is a seasoned marketing and communications leader whose work with the Spina Bifida Association (2017–2021) left a lasting impact on the organization and the community it serves. As Director of Communications and later Chief Operating Officer, she led major initiatives that strengthened SBA’s national presence and advanced resources for individuals with Spina Bifida. During her tenure, Sheliah launched the Guidelines for the Care of People with Spina Bifida, helped establish the first Teal on the Hill advocacy event and the first Clinical Care Meeting, and oversaw the creation of a new website and SBA’s first symptom‑tracking app. Her expertise in brand development, trusted communications, and multi‑channel marketing—combined with her ability to build consensus and lead cross‑functional teams—continues to shape the way SBA supports and informs the Spina Bifida community.

Heidi Siegel is a South Florida native, mom to Shoshana, a young adult born with Spina Bifida, and advocate for the Spina Bifida community. Since attending Teal on the Hill in 2019, she’s served on its planning committee and as MC since 2023. Heidi and her wife, Jennifer, enjoy RVing, travel, and collecting vintage memorabilia. With over 25 years in local government, Heidi is currently Town Manager of Jupiter Inlet Colony. Her career spans roles in Miami Beach, Biscayne Park, Hollywood, Wilton Manors, Palmetto Bay, and the Seminole Tribe of Florida. She led a successful federal law amendment to protect historic signage and has overseen planning, operations, and development across multiple municipalities. Heidi holds degrees in history and historic preservation.

Kathryn Smith has over 35 years of experience in caring for children with special health care needs, including those with neurodevelopmental disabilities. She serves as a Professor of Clinical Pediatrics at the Keck School of Medicine of USC. At Children’s Hospital Los Angeles (CHLA), she serves as the Associate Director of Policy of the USC University Center of Excellence in Developmental Disabilities (UCEDD). She is co-director of the Spina Bifida Center, site PI for the Autism Care Network, co-director of the Rett Clinic,  nurse care manager in the Boone Fetter autism clinic, and policy concentration leader within the Leadership Education in Neurodevelopmental Disabilities (LEND) training program at the USC UCEDD.  

Kathryn has a strong interest in child health policy, quality improvement and research in these areas.  She has extensive experience caring for children with spina bifida and their families, has led efforts for CHLA participation in the CDC’s Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida, and has served as principal investigator of CDC National Spina Bifida Patient Registry at CHLA since 2008 until present. Currently, she is also the principal investigator on the CDC National Spina Bifida Urological/Renal Protocol- Urologic Management to Preserve Renal Function for Young Children with Spina Bifida, 0-5 Years at CHLA.

Eric Tobin has worked in the music industry for over 20 years, 17 of which have been at Hopeless Records as the Executive Vice President of A&R and Business Development. He has signed over 30 artists and overseen and developed multiple RIAA certified gold and platinum releases in the US, UK, Australia and Europe. 

Over his career he has helped to develop a worldwide approach to the company’s business – adding and developing teams in seven countries to better facilitate worldwide marketing and sales campaigns which has helped the company have a tenfold revenue increase in the last decade.  His focus throughout his tenure has been building and developing artist careers through the true artist message, intention, and the inspiration they give fans around the world.  Eric and the Hopeless team’s work via their non-profit, Sub City, has raised over $3 million for various charities and continues to do so through creative music releases and local fundraising. 

Eric was born with Spina Bifida and as such has been working directly with the Spina Bifida Association of Southern California since 2018 and has raised over $50,000 personally to help build a brighter and better future for all those impacted locally and nationally by Spina Bifida. Additionally, he loves to travel and celebrated his 40th birthday by climbing to Mt. Everest base camp, a walk of over 140 miles to finish at 17,800 feet proving no matter what the challenge physically, it can be overcome.

Melissa Wiegel’s commitment to the Spina Bifida community is rooted in family. Inspired by her niece’s resilience, Melissa has dedicated herself to strengthening advocacy and support for individuals living with Spina Bifida. Her service on boards that directly impact her family has given her a powerful, firsthand understanding of how meaningful change happens. Melissa brings that insight to her work, championing access, resources, and opportunities that help every person with Spina Bifida thrive.

Sara Struwe has served as President & CEO of the Spina Bifida Association (SBA) since 2014. With nearly 40 years of nonprofit leadership, she is recognized nationally for her expertise in public health and disability advocacy. Since joining SBA in 2009, she has spearheaded initiatives that transformed care for people with Spina Bifida, including the Spina Bifida Collaborative Care Network (SBCCN) and the annual Teal on the Hill advocacy event. A champion of “Nothing About Us Without Us,” Sara has expanded opportunities for individuals with Spina Bifida to shape policies, programs, and research. Her career also includes senior roles with the Lupus Foundation of America and Girl Scouts of the USA. She holds MPA and BPA degrees.

Sherab joins SBA with over 20 years dedicated to nonprofit and public service, consulting, leadership, and advocacy.  She has represented the needs of vulnerable and marginalized communities and individuals in court, advocated for their needs in public forums, overseen direct services, and supported a wide array of organizations with risk and liability assessment and planning, fundraising and development, financial and strategic planning, board development and relations, regulatory and grants compliance, capacity-building, and collaborative, cross-functional initiatives. Her primary focus is to foster, support, and build capacity, effectiveness, and equity in mission and purpose-driven spaces, and her passions are planning and organizational effectiveness and excellence. She is inspired by SBAA’s mission, motivated by its purpose, honored to be a part of its hardworking, top notch team, and dedicated to improving the lives of people living with Spina Bifida, their allies, and the other critical stakeholders that support SBAA’s work. On her off days, Sherab enjoys travel, the outdoors, women’s sports, and the combination of a good meal shared with great company.

GlenRae Brown has served as the Chief Financial Officer (CFO) of SBA since 2020, bringing over 15 years of experience within the organization. Throughout her tenure, she has held key roles, including Staff Accountant, Director of Finance, and Chief Operating Officer (COO). As CFO, she acts as a strategic advisor to the CEO, COO, and Board of Directors on all financial matters, ensuring compliance with financial and regulatory standards while safeguarding the organization’s fiscal integrity. GlenRae holds a Bachelor’s degree in Accounting from Southern University in New Orleans. Her commitment to SBA’s financial health and mission is deeply personal, inspired by her stepdaughter’s journey with myelomeningocele, the most severe form of Spina Bifida.

Bharathi joined the SBA in November 2024, bringing over eight years of experience working with multiple nonprofit organizations. She is passionate about using technology to support nonprofits committed to making a positive impact. With expertise in Salesforce, Pardot, Mailchimp, email marketing, and web development, she leverages her technical skills to advance SBA’s mission of enhancing the lives of individuals affected by spina bifida. As the Database and Technology Manager, she focuses on optimizing systems and processes to help SBA efficiently deliver vital resources, advocacy, and support to the spina bifida community. Her goal is to ensure smooth operations that allow the organization to focus on creating lasting change. Outside of work, she enjoys reading, cooking, spending time in nature, and being with her family.

Kelli Deferme brings more than a decade of experience in nonprofit strategy, community engagement, partnerships, and fundraising. She spent six years at JDRF (now Breakthrough T1D) as Community Engagement Manager, where she built lasting relationships with families, volunteers, and donors, and led the large-scale events that connected the community with the resources they needed most. As Director of Cause Alliances at HundredX, she helped scale an innovative national fundraising program from 50 to more than 2,500 nonprofit partners, generating nearly $30 million in revenue for causes across the country.

Kelli understands firsthand what it means to walk alongside families navigating chronic conditions, and she is known for showing up with warmth, practical solutions, and a deep belief that the people closest to a cause are its strongest advocates. She lives in the Denver area with her husband and their three daughters, and can be found outside enjoying hiking trails, birds, and beautiful scenery.

Leslie joined SBA in 2022 as Financial Data Entry Specialist. Prior to joining SBA she was at Gannett Co., Inc. for 15 years as part of Corporate Accounting and participated in system implementations and trainings. She has 3 years of nonprofit accounting experience at AMT – The Association for Manufacturing Technology as well as 4 years of event planning experience.

Stephanie joined SBA in 2022 but has been passionate about serving individuals with disabilities since she started her fundraising career in 2014 at a home for people with severe and profound disabilities. Throughout her ten-year career in Development, she has worn various hats including Development Coordinator, Community Events Manager, Race Director, and Individual Giving Manager. What motivates her is connecting with the Spina Bifida community and creating lasting and authentic relationships with people and corporations. Stephanie recently relocated from her hometown outside of Chicago, IL to Sparks, NV to spend more time enjoying the outdoors, hiking, skiing, and traveling with her husband and two little girls. 

Juanita has managed the SBA’s National Resource Center since 2014, and has been associated with SBA over 15 years. Juanita fields inquiries from persons with Spina Bifida, family members, health care personnel, case workers and many others who are connected to the Spina Bifida community (She is the National Resource Center). She is fluent in Spanish and uses that ability to respond to queries from Spanish speakers, and to coordinate the translation of SBA’s informational materials into Spanish. Her favorite part about working at SBA is when she is able to connect individuals with each other and to local services, and especially when she can meet them in person at events such as the SBA National Conference, Education Days, and Walk-N-Rolls. 

Colleen Payne joined the SBA staff in June 2026 as Director of Research and Services. Prior to that, she spent 15 years supporting SBA as both a consultant and volunteer and also served as Executive Director of the SBA of Kentucky. Colleen is trained as a rehabilitation counselor and brings personal perspective as the parent of a young adult with Spina Bifida. She is a passionate advocate for the power of community connections, education about Spina Bifida and resources, and the application of research to create meaningful change.

Lindsay joined the Spina Bifida Association in 2026 as Senior Development Manager. Previously, she worked in international peacebuilding, supporting cross-border reconciliation efforts and helping mission-driven organizations expand their impact through strategic fundraising and storytelling. Throughout her work in the nonprofit sector, Lindsay has served in a variety of roles, including photographer, fundraiser, event planner, grant writer, and relationship builder. She is energized by bringing people together around a shared purpose and creating opportunities that transform generosity into meaningful impact.

Inspired by SBA’s vision of a world where all people with Spina Bifida can thrive, Lindsay is passionate about cultivating partnerships with individuals, foundations, and corporate supporters to strengthen the Spina Bifida community and expand access to resources, advocacy, and support. Born and raised in the Austin area, Lindsay enjoys gardening, trying new recipes, and exploring natural swimming holes throughout Texas.

Judy Thibadeau joined SBA in a staff capacity in January 2018, and moved to a consulting role June 2026. Prior to SBA she served as a Health Scientist for Spina Bifida on the Rare Disorders/Health Outcomes Team, National Center on Birth Defects and Developmental Disabilities at the CDC. For more than 30 years, she has been involved with the care of people affected by Spina Bifida, including collaborating in the development of an independence enhancement program for children with Spina Bifida while at the Shepherd Center and developing continence management approaches in pediatric urology at the Emory Clinic, both in Atlanta, Georgia.

Jessica Mobley is an adult living with Spina Bifida and a dedicated advocate within the Spina Bifida community. She earned her Bachelor of Science in Interdisciplinary Professional Studies with a minor in Digital Marketing from Colorado State University Global.

Jessica has been involved with the Spina Bifida Association (SBA) since 2017, when she attended her first Walk-N-Roll event. In 2021, she joined the SBA of the Carolinas Advisory Council, and in 2024 she became a consultant, supporting multiple departments including Walk-N-Roll, Field Development, Marketing and Communications, and Research.

Through her work with SBA, Jessica has built lifelong friendships and witnessed the organization’s impact firsthand. She is honored to partner with SBA teams and contribute to efforts that create meaningful, lasting change for the community she cares about so deeply.

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 (such as wheelchairs, mobile health, and preventative care programs).