Patient Advisory Committee

Chair, Patient Advisory Committee

Lea Jabre, a Franco-Lebanese citizen, was born in 1987 and has experienced a culturally rich upbringing in Paris and Marbella. She pursued her higher education at the University College of London (UCL), earning a BA in European Social & Political Studies and an MSc in International Public Policy.

Lea initially launched her career in journalism in London before relocating to Lebanon to become a political consultant with a focus on the MENA region. However, her career trajectory shifted when she decided to dedicate herself to non-profit work with various Lebanese organizations.

For the past seven years, Lea has been at the helm of an NGO named OpenMinds, pouring her heart and soul into its cause. Personally impacted by a range of autoimmune diseases, including a rare condition, she has drawn inspiration from her work to become a strong advocate for those with rare diseases.

Embracing her journey with Stiff Person Syndrome, Lea created the Instagram page, bent_not_broken, providing a candid look into her personal experiences. She is deeply committed to the SPSRF, contributing significantly to its fundraising and communication initiatives.

In her role as Chair of the Patient Advisory Committee, Lea continues to effect change by supporting others, spearheading fundraising efforts, and advocating for research to improve treatment options and ultimately find a cure for SPS.

Co-Chair, Patient Advisory Committee

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.

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. As the Chair of the annual SPS Conference and Co-Chair of the SPSRF's Patient Advisory Committee, David is excited to contribute to this mission.

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, a resident of Connecticut, cherishes the support of his wife Shannon, their loving dog Lucy, and their two grown sons, Ian and Sean, who happily reside nearby.

Tom brings to the table over 25 years of experience in marketing and finance. In 2011, following years of persistent back pain and anxiety, he was diagnosed with Stiff Person Syndrome (SPS). The severity of his condition led him to take full disability that same year, and he began Intravenous Immunoglobulin (IVIG) therapy about nine years ago.

Despite his health challenges, Tom finds solace in playing the guitar and stays connected to his professional roots by tuning into the finance channel daily.

Tom joined the Patient Advisory Committee out of a steadfast belief in the Stiff Person Syndrome Research Foundation (SPSRF) as a crucial advocate for individuals afflicted with this debilitating disease. He is also confident that a cure exists, and collectively, we can uncover it.

He is enthusiastic about collaborating with his colleagues on the Patient Advisory Committee. Their shared objective is to bolster the SPSRF's mission—raising awareness, supporting research for improved treatments and a cure for SPS, and fostering a robust community through education and collaboration.

Hannah Hurst hails from southeastern Connecticut, USA, where she lives with her supportive husband Sam and their three lovely children, Tricia, Vinny, and Abby. Hannah's life took a turn in 2020 when she was diagnosed with Stiff Person Syndrome (SPS). Before her diagnosis, she was a Registered Nurse Educator with a Master's degree, managing a neuroimmunology infusion center.

Hannah joined the Patient Advisory Committee of the Stiff Person Syndrome Research Foundation (SPSRF) as a means to continue advocating for others. Despite the challenges posed by her condition, this role has provided her with a renewed sense of purpose, allowing her to utilize the skills and expertise she honed throughout her career.

Though her disability has imposed certain restrictions, Hannah finds solace in crocheting, spending quality time with family and friends, and listening to music. As part of the Patient Advisory Committee, Hannah is committed to advocating for research, treatment, and increased awareness of SPS.