The SPSRF Patient Advisory Committee

Lahoma Nachtrab is a former Chief Certified Registered Nurse Anesthetist (CRNA) and a 500-hour certified yoga instructor. She had to step back from her CRNA practice and yoga teaching in 2019 due to health challenges. With a diverse background in cardiovascular recovery, critical care nursing, and environmental health, she has always been passionate about healthcare and advocacy.

As the oldest of five daughters, Lahoma naturally gravitated towards leadership roles throughout her life. Despite becoming disabled, she has continued to advocate for awareness and support for those with rare conditions. She has co-hosted Zoom meetings for various support groups and actively engages with the community through social media and local news outlets.

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Her journey with Stiff Person Syndrome (SPS) began with a series of unexplained symptoms that worsened over time, leading to her diagnosis in 2019. Despite significant health challenges, including severe muscle spasms and mobility issues, she remains committed to advocacy. Her persistence in seeking answers and appropriate treatments exemplifies her resilience and dedication.

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Now serving as Chair of the SPSRF Patient Advocacy Committee, Lahoma brings her extensive experience and passion to the role. She is dedicated to supporting, educating, advocating, and raising funds for better treatments and a cure for SPS. Her personal experience as a healthcare provider and patient fuels her drive to make a difference for the SPS community.

David Axelrod, of Milford, Connecticut, works as a Senior Talent Acquisition Specialist. Despite being reshaped by the challenges of Stiff Person Syndrome (SPS), David remains a resilient and optimistic individual. He cherishes the company of his loved ones, the satisfaction of assisting others, and the thrill of capturing the world's splendor through his lens - a passion ignited post-diagnosis.

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David found a supportive community in the Stiff Person Syndrome Research Foundation (SPSRF), a potent force he sees as instrumental in advancing research, raising awareness, fostering education, and championing advocacy. 

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He encourages others to join him and many others on this journey. Donations to the SPSRF can ignite pivotal research, refine treatment protocols, and offer a beacon of hope to those affected by SPS.

Tom Wilson lives in South Windsor, CT, with his supportive wife, Shannon, and their loving dog Lucy. They have two grown sons, Ian and Sean, who live nearby. Tom has a background in marketing and finance, with over 25 years of experience in the industry.

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Diagnosed with Stiff Person Syndrome (SPS) in 2011 after years of back pain and anxiety, Tom went on full disability the same year and began IVIG treatments nine years ago. Despite his health challenges, he enjoys playing guitar and watches the finance channel daily.

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Tom joined the Patient Advisory Committee because he believes in the powerful voice of the Stiff Person Syndrome Research Foundation (SPSRF) for those suffering from SPS.

 

He is committed to supporting the mission of SPSRF to raise awareness, advance research for better treatments, and find a cure. Tom looks forward to working with the committee to strengthen the SPS community through education and collaboration.

Mynde Leone Smith currently resides in Colchester, CT. With an entrepreneurial spirit, she co-founded and eventually became the President/CEO of a successful company in the energy sector. Her skills in team building, generating financial relationships, and data analysis are valuable assets to the foundation.

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Diagnosed with Stiff Person Syndrome (SPS) in 2009 after experiencing general stiffness and swelling in her left knee, Mynde embarked on a journey through the medical community. Discovering the lack of information and attention given to this rare disease, she committed herself to educating others and finding a care team that would think outside the box.

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Mynde's mission was to bring hope to other SPS patients by advocating for a cure and raising awareness within the medical community. Her efforts led her to the Colorado Blood Cancer Institute, where she underwent a stem cell transplant with BEAM chemotherapy, originally developed for Multiple Sclerosis patients. This treatment significantly altered the course of her disease.

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Although she continues maintenance medication and Botox injections, Mynde is now able to run, drive herself to appointments, and participate in high-level sports medicine therapy. She is dedicated to raising funds and hope for others through The SPS Research Foundation.

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Mynde is grateful to work with the Foundation team to pursue her dream of finding a cure for SPS. She has two successful children and three grandchildren who bring her immense joy. In her free time, Mynde enjoys hiking, trail running, riding horses, cooking, painting, and spending time with family and friends. Her outlook on the future is bright, and she is committed to advocating for education, patient support, and fundraising for SPS research.

Khita Whyatt, a resident of Ann Arbor, Michigan, has dedicated her life to movement and healing. She began as an elite athlete until she was first diagnosed with a rare disease in 1978. In 2008, a severe head injury from a car accident changed her life, leading her to invent and patent the Bodhi Suspension System to regain her mobility. This period also marked the onset of her spasms and central nervous system dysregulation, which were later diagnosed as Stiff Person Syndrome (SPS) in 2022. 

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Since 1984, Khita has worked in injury prevention and rehabilitation as a Rolfer, movement specialist, and somatics educator, and has lectured at The University of Michigan Department of Dance since 1996. Her Native American heritage profoundly influences her perspective on health, viewing disease as an imbalance of the body, mind, and spirit.

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Khita believes The Stiff Person Syndrome Research Foundation is essential for raising awareness, advocating for patients, and fostering collaboration between patients and doctors. She is honored to be a part of the Patient Advisory Committee, contributing her experience and insights to the fight against SPS.

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