The rare disease advocate turning her personal battle into a global message of courage,
compassion, and change.
By LuxeStavia Editorial
There’s a quiet power to Lea Jabre
the kind of presence that commands attention not through volume, but through depth. With her signature poise and gentle eloquence, she embodies resilience, intellect, and grace. A Rare Disease Advocate, Co-Founder of an NGO, and Communication & Fundraising Manager, Lea has built her life around amplifying the voices of others. Yet, it was her own voice — raw, vulnerable, and unwavering — that would ignite a movement.
Lea’s story begins with words. “I’ve always loved writing,” she says, her tone both reflective and assured. After earning her MSc in International Public Policy from University College London, she began her career as a published journalist and political consultant before moving into the nonprofit sector. What followed was a decade dedicated to raising awareness and promoting inclusion for individuals with special needs. Eventually, she rose to become Director of her organization — a role that allowed her to blend strategic leadership with deep human connection.
But life, as she would soon learn, had other plans. In late 2023, after years of dedicated service, Lea made the difficult decision to step down from her role due to health challenges. It was a moment that could have silenced her. Instead, it sparked a new chapter of her life — one defined by courage, creativity, and advocacy.
The Turning Point
The catalyst came in 2022, through a deeply personal moment shared publicly. Lea released a video chronicling her search for a diagnosis, titled “If You’re Not Dancing, Something Is Wrong.” The raw honesty of her story resonated with thousands and went viral. “It wasn’t planned,” she recalls. “But it showed me how many people needed to hear — and share — similar experiences.”
Out of that moment, Bent Not Broken Autoimmune was born. What started as a small advocacy page quickly evolved into a powerful community for patients and caregivers affected by Stiff Person Syndrome (SPS) and other autoimmune conditions. “The name says it all,” she smiles. “I may be bent, but my spirit is never broken.”
Through this platform, Lea has created a safe, empathetic space where people can find understanding, share their struggles, and celebrate their triumphs. It’s more than advocacy — it’s storytelling with purpose, and it has made her a respected figure in the rare disease community.
Living with Resilience
Chronic illness has redefined Lea’s relationship with herself and the world. “Accepting the deterioration of my mobility while my mind is still fully active has been the hardest part,” she says. “I can’t drive anymore, and walking long distances is difficult. You lose a sense of freedom. But you gain a deeper awareness — of your inner world, your strength, your purpose.”
Her honesty about these changes is disarming. Rather than masking vulnerability, she uses it to inspire self-acceptance and empathy. “You have to work on your inner self,” she explains. “It’s the only way to stay whole when the world around you shifts.”
Her return to professional life in May 2024 marked another powerful milestone. Joining Reddo as a Communication and Fundraising Manager, she now uses her expertise to amplify causes close to her heart — all while balancing her health, advocacy, and creative pursuits.
Lea is also preparing to launch a new nonprofit, Boukra Nour, alongside a close friend. Meaning “Tomorrow’s Light” in Arabic, the organization embodies hope, inclusion, and action — values that have guided her throughout her journey. “It’s about building something that lasts,” she says. “A legacy of compassion and community.
A Voice That Shines
When asked what inspired her to step into the public eye, her answer is both simple and profound. “When I realized I had a voice — and that it made a difference. I didn’t know I could do it.”
That authenticity is at the heart of everything she does. In a digital age of curation and perfection, Lea’s transparency feels radical. Through Bent Not Broken, she invites others not just to witness her story, but to share their own. Her upcoming book — an intimate reflection on resilience, advocacy, and hope — promises to expand that message even further.
Lea’s presence is calm yet commanding, her influence subtle yet deep. She doesn’t chase spotlight moments; she creates meaningful ones. Every project she touches — from online campaigns to nonprofit initiatives — carries her signature blend of empathy, elegance, and strength.
Bent, But Unbreakable
I never thought I’d define career and achievements by the present moment,” Lea reflects. “But I’m proud of how far I’ve come.
In her world, success isn’t about titles or accolades. It’s about progress — sometimes quiet, often hard-won, always intentional. “Bent Not Broken” is more than her platform’s name; it’s a philosophy, a daily reminder that beauty exists even in imperfection.
Through her work, Lea is rewriting the narrative of what it means to live fully — not despite challenges, but through them. She is the voice of those still searching for theirs, the proof that even when life bends you, you can rise again — stronger, softer, and more luminous than before.
Because in Lea Jabre’s story, resilience isn’t just survival.
It’s art.
