When life threw unexpected challenges her way, Lea Jabre didn’t just face them—she turned them into purpose. After years of searching for answers and finally being diagnosed with Stiff Person Syndrome, Lea chose to speak up not just for herself, but for countless others navigating similar journeys in silence. From launching the Bent Not Broken Autoimmune community to connecting with patients and caregivers around the world, her work has grown into something bigger than a diagnosis—it’s become a movement. In this interview, Lea opens up about her early life, what keeps her going, and how she’s building bridges of hope across borders.
A Mission Rooted in Experience
We were curious about Lea Jabre’s background, so we asked her to share something about her early life.
Lea Jabre: Always found it striking how I was always a straight A student, but always told by teachers from a young age that I could easily disrupt classes because I talked too much at the back of the classroom. Also every year regardless of other prizes I may have gotten, I always got the friendship prize as I was very friendly with all my classmates.
Lea Jabre on Finding Her Purpose Through Advocacy
We wanted to understand what inspired Lea Jabre to become an advocate for rare and autoimmune diseases, so we asked her to share the story behind her advocacy journey.
Lea Jabre: I used to (up until December 2023 when my disease got in the way of my work) be the Director of a non-profit that raised funds for treatment packages, awareness for inclusion and research for special needs individuals. Open-Mind taught me the importance of advocacy and the difference every little step forward could make. When I finally got diagnosed with Stiff Person Syndrome after 5 or 6 years long journey of medical gaslighting and a video was made on my struggles to get diagnosed; I came up with a friend of mine with the name ” Bent Not Broken Autoimmune” (a play on words) and launched the Instagram page with the video called “If you’re not dancing something is wrong.”
At first my idea was to create a page where people would send me their own stories to post, so people could find out more about chronic autoimmune illnesses and patients could meet. I had felt so lonely my first year of diagnosis and during my search for one, I didn’t want anyone to ever feel that lonely. Resources were few back in 2021 and that is why I decided to become an advocate for rare and autoimmune diseases. The page picked up rather quickly but few people at first spoke out so I started sharing my journey to raise as much awareness as possible and to build a community for all patients to meet through and exchange personal numbers or stories once having met through BNB and creating bonds without the page after that. Who was I to achieve what BNB has become today? I have no idea, all I can say is I am so proud of its success, of how it helps people and how it has contributed to many across the globe to meet each other. Last but not least, it led to creating a YouTube Channel called “Heart to Heart Conversations” on topics Doctors can’t have answers to which also has become a helpful resource for SPS patients and others.
Lea Jabre on the Urgency of Stiff Person Syndrome Advocacy
We asked Lea Jabre why advocating for Stiff Person Syndrome is so important to her, and what makes this condition so critical to bring into the spotlight.
Lea Jabre: No one knows about it or no one knew, before Celine Dion spoke out about her diagnosis and still today, little is known. SPS is a wide spectrum disease that affects people with quite a wide range of symptoms and level of disability.
It is such a peculiar disease, often invisible in many of its symptoms and extremely painful ( a concept with no measuring tool, and therefore very hard to explain to others).
It is important because often called the invisible disease, we as patients are not invisible and although it is a vast spectrum anyone diagnosed with SPS has their life turned upside down as it affects all aspects of life (relationships, work, social life, mobility, pain, hypersensitivity, mood etc.)
The Challenge of Fundraising
We were interested in learning about the biggest challenge Lea Jabre faces when it comes to fundraising for rare diseases, so we asked her to shed light on that part of her work.
Lea Jabre: Having worked as previously mentioned as a Director for a non-profit (OpenMinds for 8 years and Roads for Life for 2 years prior to that) donors usually like to understand how much impact and how many people will be helped by their donations. This is one very important and challenging aspect when fundraising for rare diseases, as most donors are usually affected directly or indirectly by someone with a rare disease and that makes it much more challenging to appeal to the wider public to receive more and bigger donations for much needed research for better treatments and eventually cures. Moeover, research is often very expensive and doctors are often denied research grants- it becomes a catch 22.
Lea Jabre on Building Genuine Connections with Patients and Caregivers
We were curious to know how Lea Jabre engages with patients and caregivers, and what those relationships have come to mean in her advocacy work.
Lea Jabre: I have become friends with many, it is surreal how the world has changed and friendship can be developed and become real and solid behind a computer screen even if you haven’t physically met the person (if I may say, one positive thing that came out of Covid is the normality of talking on zoom, teams, google meet etc.). I have also met people with whom we are aspiring to raise more awareness together on future campaigns. If anyone I don’t know sends me a DM, I try as best to always answer and keep in touch with most. BNB has been such an important part of my medical journey since being diagnosed in May 2021. It was created in October 2022 and I have met some of the most amazing people, many that have become part of my daily life. A special mention to Dr. Ilea Khan who has become one of my besties from afar and who is the woman with whom I have created the YouTube Channel where our episodes are really, ‘Heart to Heart conversations on real & raw topics”.
Fueling Hope Through Impact
We asked how she stays motivated while working in such an emotionally demanding field, especially while managing her own health challenges.
Lea Jabre: It is hard sometimes and I have learned that it is OK to slightly step back and be less present online as I am sick myself. However, it brings me such joy to help people, and I find it helps me as well.
Also the achievements help my motivation to strive and do more because as a career woman, I have never felt the same way I have with any of the advocacy achievements I have accomplished. One of the first testimonies I received from a patient was that BNB and myself had inspired them to work again. That patient created their own online business from their bed and when I received a DM filled with such beautiful words thanking me, the feeling of accomplishment I felt was indescribable and made me cry tears of joy. In my whole life, I had never felt such a feeling of accomplishment and meaning.
Learning to Lead with Impact
We wanted to know how her experience with Harvard Business School Online has influenced her work and approach to advocacy.
Lea Jabre: The courses I took definitely awoke an entrepreneurial character trait I had never really tapped into before. And surely is influencing the work I want to put into the success of our YouTube episodes which have been recommended to new patients by several renowned “SPS” specialized neurologists in the US, Canada & Spain. I am now working with a group of patients and caregivers to see how we can develop a significant worldwide raising awareness campaign.
I don’t think I would have had any knowledge or the guts to do it if I hadn’t taken the courses that have shaped the way I think in a different manner.
I studied political science both for my BA and MSc at UCL in London and my Harvard courses on leadership and entrepreneurial skills have greatly complemented how I think and structure my approach to work, projects and advocacy.
Uniting Voices Across Borders
We asked how important global collaboration is in rare disease advocacy, and what role it plays in shaping the future of awareness and support.
Lea Jabre: ESSENTIAL and difficult to achieve but many links, connections and friendships have been established and I think global collaborations are going to become more and more part of the norm.
Looking Ahead
We were interested in hearing her vision for the future of rare disease support and what meaningful change could look like through collaboration.
Lea Jabre: The above Global Collaborations – It is essential to create real community support and to make a real change.
A Message That Matters
To close our conversation, we asked what one message she would like the world to hear from her today.
Lea Jabre: If you thought you couldn’t do it, you can! No, it is not a corny statement, it is acquired wisdom from strength that has come to me both mentally and physically from events In the last few years that have shaped an essential way of thinking, to live. I survived a severe septic shock and pulmonary cardiac arrest due to choking and spasming and I am “Bent not Broken”!
Thank You for Sharing Your Journey
The Leaders 360: We extend our heartfelt thanks to Lea Jabre for generously sharing her story, insights, and passion with us. Her courage, honesty, and commitment to advocacy continue to inspire and uplift so many around the world. It’s voices like hers that remind us of the power of community, resilience, and purpose. Thank you, Lea, for being a beacon of strength—and for showing us all what it truly means to be Bent Not Broken.
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