When I founded Local Families with Bleeding Disorders in 2019, I was driven by a passion to support those in my community who, like me, understood the challenges of living with a bleeding disorder. However, despite my determination, I had no prior experience in running a charity. The responsibility was overwhelming, and I quickly realised I needed guidance to navigate the complexities of establishing and leading an organisation.
That’s when I discovered the mentor scheme run by Findacure (now Beacon for Rare Diseases). I applied, hoping to find someone who could provide insight and support. I was incredibly fortunate and was paired with the remarkable Jenny Ousbey of Ovid Health—a leader with deep expertise in healthcare communications and advocacy.
Our mentorship was set to begin with an in-person meeting with other mentors and mentees, but fate had other plans. Just a week before we were due to meet, the world changed as we entered lockdown amid the COVID-19 pandemic. Instead of sitting across from each other at the planned workshop, we adapted and met online. Despite the physical distance (both London based but not allowed to meet in person), Jenny’s mentorship was just as impactful as if we had been in the same room.
She provided invaluable advice that helped me prioritise what truly mattered in establishing the charity. Her guidance gave me clarity and confidence at a time when everything felt uncertain. Jenny’s support helped me navigate challenges that initially seemed insurmountable, and for that, I will always be grateful.
I also want to extend my heartfelt thanks to Beacon for Rare Diseases for their incredible mentor scheme. It was a lifeline during a time of uncertainty, and I wholeheartedly encourage others in similar situations to seek support through their program.
Thank you, Jenny, for your time, wisdom, and generosity. Your mentorship has had a lasting impact, not just on me, but on the families our charity serves every day.
