Knowledge is Power (Part 2)

The second part of the Osteogenesis Imperfecta Foundation Network, UK’s “Knowledge is Power” series was a vital event, organized in direct response to the clear and urgent demands of the OI community. People living with OI and their families often face unique and complex challenges across many areas of life—ranging from financial management and education to social inclusion and housing accessibility. The community expressed a strong need for reliable, expert-led information and practical guidance to help navigate these challenges more effectively.

This event was designed to empower individuals with OI by providing them with the tools, knowledge, and confidence necessary to overcome barriers, advocate for their rights, and improve their quality of life. By addressing the topics most relevant to their daily experiences, the series aimed to bridge gaps in understanding, promote independence, and foster a sense of solidarity within the OI community. The enthusiastic participation and feedback from attendees confirmed that such tailored, expert-driven sessions are not just beneficial but essential to meeting the community’s ongoing needs.

Stella Okuzu – Financial Technocrat

Stella Okuzu brought her expertise as a financial technocrat, focusing on how people with Osteogenesis Imperfecta (OI) can manage their finances effectively despite the unique challenges they face. She discussed strategies for budgeting with potential medical expenses, navigating benefits and disability allowances, and planning for long-term financial security. Stella emphasized the importance of understanding credit, investments, and digital financial tools that can empower individuals with OI to maintain financial independence. She also highlighted emerging fintech innovations that could make managing money easier and more accessible.

Emma Emmanuel – Academic Coach and Specialist in Law

Emma Emmanuel provided crucial insights into academic progression and legal rights for people with disabilities, including those with OI. As an academic coach, she shared strategies on how to maximize learning opportunities despite physical limitations and chronic health issues. She also covered accommodations available in educational institutions, such as assistive technology, extended exam times, and flexible attendance policies. On the legal side, Emma delved into disability rights legislation in the UK, focusing on the Equality Act 2010 and how it protects individuals with OI from discrimination in education and beyond. Her session equipped attendees with knowledge to advocate for their rights and access the support they need.

Juliet Makhapila – Social Scientist and Leadership Trainer

Juliet Makhapila brought a unique perspective from her background in social science and leadership training. She addressed the social dynamics and psychological aspects of living with OI, including the importance of building resilience and self-confidence. Juliet’s leadership training focused on empowering individuals to take charge of their personal and professional lives, fostering advocacy skills within the OI community. She discussed how social attitudes can impact mental health and the importance of community networks and peer support. Her session encouraged participants to become leaders in raising awareness and shaping policies related to disability inclusion.

Toyin Awe – Housing Expert

Toyin Awe, with her extensive experience in the UK housing industry, tackled one of the most pressing issues for people with OI: accessible and affordable housing. She explored the challenges faced by those with mobility and physical needs in finding suitable accommodation. Toyin provided guidance on navigating social housing applications, requesting reasonable adaptations, and understanding tenancy rights under UK law. She also discussed innovative housing solutions and government programs designed to enhance accessibility and independence for individuals with disabilities. Her practical advice aimed to help attendees secure safe, comfortable homes that support their lifestyle needs.

This event was exactly what I needed. Stella Okuzu’s session on financial management opened my eyes to new ways of handling my money that I hadn’t considered before, especially with the extra costs of living with OI. I feel more confident planning for my future now.

— Amina K. OI community member

Emma Emmanuel’s insights on academic rights and legal protections were invaluable. As a student with OI, I often felt unsure about how to request accommodations or what support I was entitled to. This workshop gave me clear guidance and renewed confidence to advocate for myself in school.

— Liam R. Student

Juliet Makhapila’s leadership and resilience training was empowering. It reminded me that despite the challenges, I have the strength to be a leader and voice for others in the OI community. The session was motivating and practical, helping me develop skills I can use every day.

— Rachel M. Young Adult with OI

Toyin Awe’s expertise on housing was a game changer. Finding accessible housing has always been a huge worry for me. Toyin broke down the application process and explained my rights in a way that made everything feel more achievable. I’m now better equipped to find a home that truly suits my needs.

— James O. OI Advocate

Overall, the ‘Knowledge is Power’ series is exactly what the OI community has been asking for. These sessions are more than just informative—they are empowering. They make us feel seen, heard, and supported in our journey.

— Sophie T. Parent of a child with OI

Attending the ‘Knowledge is Power’ series truly transformed how I see my journey with OI. The expert advice gave me practical tools, but more importantly, it ignited a new sense of hope and strength. I now believe that despite the challenges, I can lead a full, empowered life—and inspire others to do the same.

— Rachel O. Guardian for a child with disability

This event reminded me that I am not alone. Hearing from professionals who understand our unique challenges and connecting with others in the community filled me with courage and determination. ‘Knowledge is Power’ isn’t just a motto—it’s a call to rise, advocate, and thrive.

— Toyin Parent of a child with OI (Luton)

Testimonials from the “Knowledge is Power” Series – Part Two