Jacinta M. Behne, M.A.
Executive Director, The Guthy-Jackson Charitable Foundation
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In 12+ years with The Guthy-Jackson Charitable Foundation (GJCF), Mrs. Behne has built a team-driven infrastructure dedicated to curing Neuromyelitis Optica (NMO), by: a) funding critical path research, b) connecting global communities of researchers, industries, and patients, and c) launching laser-focused programs. Her specific expertise is in leadership and program development, budget planning and management. She worked with three launch teams at NASA centers for over a decade, including researchers, engineers, and public information officers. There she refined processes and protocols for reaching out to stakeholders through the World Wide Web, national conferences, print materials, and media applications. Prior to joining the foundation, Mrs. Behne serves as senior director of a research and education program at Scripps Research Institute. Mrs. Behne is a member of the American Academy of Neurology (AAN), and the National Organization for Rare Disorders (NORD). She has co-authored publications on NMO study outcomes as well as the importance of building and delivering effective education and public outreach programs. She received her Bachelor of Arts with licensing in Secondary Education at Washburn University, Topeka, KS; licensing in Gifted Education at Kansas State University, Manhattan, KS; and Master of Arts in Communication at Colorado State University, Fort Collins, CO.
Daniel W. Behne M.ARCH.
Director of Operations
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Dan is one of the few who has been involved in every facet of the foundation since its inception in 2008. As a result, Dan continues to have unrelenting love and affection to its cause. Currently, Dan provides operations oversight, grant writing and project management to plan, organize and manage resources from conception to completion.
Brian Coords, M.A.
Senior Manager - New Media
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After a diverse background in media, design, writing, and education, Brian began working with the foundation in 2015. In his role as the New Media Manager, Brian provides leadership and project management for media projects including the foundation's website, smartphone app, conference events, and other various print and digital materials.
Megan Kenneally Behne
Director of Research Programs and Contracts
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Megan has been with the foundation since 2009. Her administrative background with the foundation and beyond has led to her current role as Director of Research Programs and Contracts. In this role, Megan oversees research projects and contracts, the GJCF International Clinical Consortium (ICC), and CIRCLES repository data and biospecimen requests. In addition to these roles, she also manages foundation-hosted events and communications with the global NMO research community.
Lisa McDaniel
Director of Patient Advocacy
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Lisa has been with the foundation since 2013. Her extensive experience with NMO as a caregiver and her interaction with the NMO patient community has led to her current role of Director of Patient Advocacy. Lisa provides valued insight within various NMO support groups and leads the GJCF Advocacy Team on patient projects. She handles communication with the NMO community and represents the foundation in raising awareness through educational events with patients as well clinicians.
Reneé Rodriguez
Senior Project Coordinator
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Reneé joined the foundation in 2013. She brings a wealth of experience from previous positions as a Conference Manager at a mid-sized law firm and owner of small couture business. As Senior Project Coordinator, Reneé is a coordinator extraordinaire providing calendar management, conference logistics, administrative support, and the fineness to keep the gears of the foundation moving forward.
Maoloude Toure
Global Ambassador
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Born and raised in Senegal, West Africa, Maoloude Fall Touré is a former professional rugby player and swimmer, proud veteran of the United States Army Prior to immigrating to the United States, Mr. Touré studied sociology, philosophy at the University of Dakar and Computer science at Santa Monica College. He speaks five languages, being professionally fluent in English and French. An active health advocate and blood donor since the age of 17, Mr. Touré uses his skills as an orator to inspire others while leading by example.
As Global Ambassador, Maoloude Toure represents the Guthy-Jackson Charitable Foundation in its work to spread awareness and increase international cooperation towards a cure for NMO. He travels the world as formal representative of the foundation to speak with patients and clinicians alike. Over the past two years, he has engaged with the President of Mali and the Ministers of Health in Bamako, Mali, high-level Catholic priests in Rome, Italy, and leading scientists in Berlin, Germany, and Moscow, Russia. Mr. Touré is determined to do his part in finding a cure for NMO.
Cori Woolf
Co-Director of Patient Advocacy
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Cori Woolf joined the Advocacy Team in January of 2021. Her many years as an NMO caregiver as well as more than 20 years in other areas of professional patient support led to her current role as Co-Director of Patient Advocacy. Cori's leadership allows further development of domestic and international programs and projects intended to deepen engagement, promote education, and offer encouragement and support to patients, caregivers, and other NMO organizations within the growing NMO, MOG and rare disease communities.
Megan Woolf, B.S.C.
Social Media Manager
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With a previous background in video design, content creation, and editing, Meg joined Guthy-Jackson in 2022, enthusiastic to connect with NMOSD patients and caregivers on social media. A patient herself, Meg personally understands the patient perspective and works to amplify the patient and caregiver voice through the medium of visual and auditory media. As Social Media Manager, Meg runs the social media pages, designs graphics and content for all platforms, researches methods and programs to build a more inclusive virtual atmosphere, and connects with those in the NMOSD community to fulfill an accurate and focused viewpoint of life with Neuromyelitis Optica.
Kim Jackson-Matthews
Diversity, Equity and Inclusion Liaison
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Kim first joined the Patient Advocacy Council in 2021 and shortly thereafter was asked to join our team as Patient Advocacy Coordinator. One of her lifelong missions has been to work with underserved communities to educate in areas of health and fitness. Kim brings over 30 years of communication skills in TV and Radio as well as a 25+ year career as a Personal Fitness Trainer. Kim’s expertise in multiple areas along with her personal patient perspective as a woman living with the challenges of NMO will help to grow advocacy programs to serve our patient and caregiver community.
Jesus Loreto
Spanish Translation Liaison
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Jesus Loreto joined the GJCF Advocacy Team in 2023. He is a caregiver to his beautiful wife, Maria, since her NMOSD diagnosis. The journey to understanding NMOSD and the care needed for Maria has taken Jesus from a community member to a deeply passionate advocate. Jesus brings trusted research updates, educational resources, and support to the Spanish speaking community of patients, care partners, and clinicians. “Finding The Guthy Jackson Charitable Foundation changed our life, the love, security, hope and knowledge we receive has made our journey a journey with a purpose… A purpose to advocate for others, realizing that by helping and by telling our story we can change people’s lives, making them realize they are not alone in this journey. As a Certified Caregiving Advocate and as part of the Guthy Jackson Charitable Foundation Patient Advocacy Council I am honored to support both English and Spanish speaking patients and caregivers in the US and all over the world thru the GJCF support groups and monthly meets. Let us continue in this journey together, supporting and being there for each other. We are here for you… You are not alone… "We live with NMO but NMO is not our life".