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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Born and raised in the Bronx, New York, Davin Persad has always been described as someone who meets challenges head-on and is often an adrenaline seeker in life. With a natural curiosity about how the human body and mind work, he studied biology, business, and medicine, which provided a strong foundation in medical sciences, payer-provider models, and the importance of mental health. Over time, he developed a profound appreciation for the importance of emotional support, particularly for individuals facing health challenges associated with rare diseases. 

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After years of unexplained symptoms, Davin was officially diagnosed with Stiff Person Syndrome (SPS) in January 2023. That moment became a turning point across all facets of life. Instead of letting the diagnosis further isolate him, he was determined to create something meaningful: an online support group where people with SPS, caregivers, friends & family can connect through an interactive virtual community, resulting in meaningful relationships and the ability to be seen and heard. Through regular video calls, the group brings people with SPS together in real-time, serving as a safe space for members to learn from one another, encourage advocacy, and ultimately allow members to feel less alone, regardless of where they are in their SPS journey. Davin often refers to the group as an ‘ohana’ - a chosen family - a family where all feel understood and valued. 

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Now, as a member of the SPSRF, Davin can broaden his advocacy and is working towards expanding the sense of connection for the SPS community. He is also helping to build a centralized library of resources for patients, caregivers, and medical professionals, allowing for more accessible information and bridging the divide between real-world patient experiences and research, a true passion of his. Through this work, he hopes that his efforts will contribute to better treatments, empower people, and ultimately be a step in the right direction towards a cure.

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Outside of advocacy, Davin is all about adventure and creativity. With a love for the outdoors, Davin was an avid scuba diver, hiker, and mountain climber. Today, he immerses himself in nature as often as possible, with a newfound title of ‘official plant parent’. Davin seeks human connection whenever he travels and often immerses himself in whatever culture he visits. As a former bodybuilder and boxer, he believes in pushing his body, both mentally and physically, whenever possible. He has a wide array of musical tastes, ranging from opera and classical to Bollywood, rap, and heavy metal, as well as a passion for astrophysics, marine biology, and rebuilding engines. Davin was once a motorcycle enthusiast, and riding Harleys was his form of meditation. He now finds “zen” in spending time with his incredible wife, their two pitbulls, Zoey & Zeus (fondly referred to as Z²) and continuing to demolish anyone that crosses his path in the game of ‘Uno’ as the reigning champion.