Lea Jabre’s journey from political writer to rare disease advocate is rooted in resilience, honesty, and hope. Through raw storytelling, global awareness, and youth empowerment, she transforms personal pain into purpose—amplifying unheard voices and redefining strength.
Interviewer – How did your experience with stiff person syndrome shape your journey from writer to rare disease advocate?
Lea – I have been passionate about politics, having parents from Lebanon – drew me directly to Middle Eastern Politics, but also growing up in the EU at a time where it was just coming together made me interested in global current affairs. After having done my undergrad at University College London, getting the opportunity to do my MSc in International Public Policy in the same prestigious university made sense. My first two jobs as a political consultant and journalist directly were connected with my studies and love for writing. My career shifted to the non-profit sector where I ended up becoming the Director – this is where I was shown and taught the power of advocacy. I became an advocate for neurodiversity and inclusion, and when I got diagnosed with my rare disease I kind of became an advocate without really knowing what I was doing and slowly it became a much bigger and important part of my life. I am very proud of what “Bent Not Broken Autoimmune” (Instagram) has achieved as well as “Living with Stiff Person Syndrome Heart to Heart” on YouTube with Dr. Ilea Khan my (SPS) Bestie.
After Celine Dion made a public announcement and I had already created my page a few months prior with a video called “If you’re not dancing something is wrong” – it made even more sense, and I started giving interviews and everything kind of boomed afterwards.
I don’t know much about how I approach raising awareness – the videos, pictures, messages I share come naturally. I really believe in sharing the real, the raw, the ugly, the truth and the beautiful moments – I never think twice about what I post because I never redo a video, nothing is ever really planned and to some extent I think that’s what has made the page or conversations stand out.
I think today the only real misconception I would like to address regarding SPS is actually that it is now called SPSD – Stiff Person Syndrome Disorders – encapsulating its spectrum of severity and symptoms.
Interviewer – Can you share the inspiration and vision behind co-founding Boukra Nour and its impact on Lebanon’s youth?
Lea – The person who gave me the opportunity to join the Reddo Team, is one of my best friend, I met Georges when I was 19 and we are both Lebanese for the most part – with his desire to do something in Lebanon and my knowledge due to my 10 years experience in the non-profit sector, it was a no brainer for us to think of establishing Boukra Nour (actual meaning: Tomorrow’s light). We joined forces with also a dear friend who is a very well established and known lawyer in Lebanon and are launching with a Press Conference on December 28th.
Objectives:
• Promoting Human Dignity Across All Fields
We are committed to upholding human dignity by empowering youth, supporting healing, and fostering environments that nurture personal growth and emotional resilience.
• Empowering Youth & Healing from Trauma
Our goal is to support young people in overcoming social and psychological trauma by helping them build strong, confident identities.
We use globally recognized therapeutic tools and techniques to reduce stress, anxiety, and emotional burdens—guiding youth toward healthier, more fulfilling lives.
• Strategic Partnerships
Collaborate with local NGOs, ministries, and municipalities to deliver coordinated, community-rooted impact.
Mission & Vision:
• Training & Awareness in Social Care
Develop specialized training programs for educators, social workers, and child-care professionals.
Focus areas include child protection, trauma-informed care, and early identification of neglect and abuse.
• Technology for Better Care
Provide tech-enabled facilities to streamline workflow and case management for NGOs working with vulnerable children and youth.
• Remote Employment Opportunities
Offer flexible, remote work to promote economic stability and professional growth.
Create safe, inclusive job opportunities for young people in Lebanon and the region.
Interviewer – What role does your Instagram community, Bent Not Broken, play in providing support and raising awareness for rare disease patients?
Lea – I think the page has become a global renown page and is also recognized by the medical community as a reliable patient resource page. With a new vision where Bent Not Broken becomes a name for anything related to SPS, the page by default becomes more interesting and has evolved into something that is more educational and that raises more awareness on spectrum disorders. What I am trying to do is to also keep videos in their original language with subtitles in order to get a wider audience – so that English is not the only language used on the page.
With collaborations with renowned magazines such as Rare Revolution Magazine (which there have been a few) and my numerous interviews & articles especially recently – I think this has helped put rare disease advocacy forward even more.
Interviewer – How has writing served as a tool for healing and empowerment throughout your personal and advocacy journey?
Lea – Writing is one of the most therapeutic tools for growth, grief, processing emotions & letting go of them as well as working towards acceptance.
I am glad I can revert to writing when I need to, it is such a powerful healing tool.
Interviewer – Looking ahead, what are the biggest goals you want to achieve with your advocacy platforms and upcoming projects like your fiction novel?
Lea – For my advocacy platforms, even the sky is not the limit—they can keep growing. The aim is to help more people and centralize information to give them access to more knowledge from patients themselves.
For me getting my fiction novel published, would be my biggest and proudest life achievement! Let’s hope for the best!
