NF Academy 2025: Georgia’s Blog

The NF Academy is an annual programme organised by NF Patients United helping shape young people into future NF ambassadors. Over the course of one week, participants take part in training and talks on NF-related medical topics, mental health, and the key skills needed to represent and support other patients.

NTUK is grateful to NF Patients United for offering a space on this hugely important program to our youth ambassador, Georgia Alexander Baum.

The NF Academy took place in Barcelona, Spain, from 22nd to 29th August 2025.

What is the NF Academy and why I wanted to take part

I was very kindly invited to join the NF Academy 2025 in Barcelona organised by Neurofibromatosis Patients United (NFPU). The NF Academy is an international training programme that brings together young people affected by Neurofibromatosis (NF) and Schwannamatosis, alongside patient advocates and experts. It focuses on education, leadership, and community, creating a supportive space to learn more about NF related conditions, build advocacy skills, and connect with others who share similar experiences.

As an ambassador for Nerve Tumours UK, and as someone living with NF1, I saw this as an incredible opportunity to represent the charity while also growing on a personal level. I wanted to expand my knowledge of NF and Schwannamatosis, not only from a medical perspective but also through the lived experiences of others.

Breakdown of each day

Friday, the day of arrival; We began the academy at La Granja, a beautiful retreat style venue that provides a welcoming and relaxed environment for learning, reflection, and collaboration. The setting was perfect for fostering connection and creating a sense of community amongst one another. Our first session was an introduction and icebreaker, where we each shared a little about ourselves and our experiences. We also met with the psychologists Marta and Xavier and camp leaders, Laia and Nil, who guided us through a group bonding activity. This exercise was designed to help us get to know one another, build trust, and feel comfortable in the new environment. It was a fun and engaging way to break the ice, settle in, and set the tone for the days ahead

Saturday Day 2 at La Granja was all about teamwork, trust, and personal growth. We began the morning with a blindfolded obstacle course, working in pairs and taking turns guiding one another using only our voices and descriptive skills. The exercise was both fun and challenging, pushing us to communicate clearly, actively listen, and build trust. It was fascinating to see how much we could achieve when we relied entirely on each other.

We then continued with team bonding exercises designed to strengthen collaboration and problem-solving skills. These activities encouraged creativity, patience, and mutual support, and offered a moment to reflect on how we work together as a team. In the afternoon, we visited the on-site farm, where we guided the horses and fed and interacted with the animals.

Afterwards, we participated in a blindfolded sensory exercise. These activities encouraged us to trust our instincts, heighten our awareness, regulate our emotions and apply the skills we had practiced earlier. The hands-on interaction with the animals was both grounding and rewarding, providing a calm contrast to the morning’s challenges.

The day concluded with group games and star-gazing, allowing us to relax, laugh, and reflect under the open sky. It was a perfect way to end a day focused on trust, connection, and self-awareness, leaving us feeling closer as a group and more confident in our ability to work together.

Sunday; In the morning, we continued with team bonding activities designed to strengthen our communication and collaboration skills. These exercises were both fun and challenging, encouraging us to think creatively, work together, and support one another in new ways. Later, we met with the psychologists for a reflective session. We checked in with ourselves and one another, exploring how the weekend of team building had impacted us personally, socially, and emotionally. It was a valuable opportunity to acknowledge our growth and recognise the connections we were forming.

After lunch, we said our goodbyes to Laia and Nil and then travelled to the hotel in Barcelona, where we were able to have some down time together and went to the beach; some people swam in the ocean while others like myself just walked along the front. We then had a group dinner at a local restaurant and then went to get some ice cream, it was a lovely way to end the weekend.

Monday; This was a day dedicated to the medical field - the day at Hospital Germans Trias started with a fascinating introduction to the human body and the science behind NF hosted by Dr Ignacio Blanco. I was amazed by how much there is to learn about our genes, how NF can affect different aspects of life, and why ongoing research is so critical. We explored how the body may work harder when having NF, what can happen during hormonal changes, and the vital role of genetic counselling and family planning. It was especially eye-opening to hear about research on how the NF gene behaves within families, including spontaneous mutations and cases where siblings are affected differently.

In the afternoon, we visited the research centre for a lecture with Eduard Serra. The focus was on cutting-edge work in genetic testing, biomarkers, and the biology of NF.

One of the most exciting moments was getting to observe cell samples and see modern lab machinery in action. It really brought home how much careful, detailed work goes into understanding NF and developing potential treatments. The dedication of the researchers was inspiring, and at times, the depth of their work felt emotional to witness.

After a full day of learning, we switched gears and explored Barcelona city centre on a guided tour. Walking through historic streets, seeing iconic landmarks, and learning about the city’s rich history was the perfect way to balance science with culture. The evening ended with a group dinner of authentic Catalan tapas, full of laughter, stories, and shared experiences. It was the perfect way to reflect on a day that was both educational and deeply memorable.

Tuesday; This day was dedicated to the Patient Advocacy Workshop, which focused on empowerment, advocacy, and the importance of community with Claas Roehl and Matt Boltz Johnson. The sessions aimed to build the skills we need to advocate effectively and highlighted why advocacy truly matters. A key takeaway was the power of a safe, supportive community and the impact it can have. Claas and Matt shared how they built their brand through collaboration with other patient communities, demonstrating how to make policymakers listen and use our voices strategically.

We explored the patient perspective, the impact of NF on families and communities, and ways to improve healthcare systems globally. The workshop also emphasised self-care, reminding us of the importance of looking after ourselves while advocating for others. We examined NF statistics and surveys and worked together to create a ‘Call for Action’, designed to spark conversation, highlight key issues, and amplify patient voices which was recorded and uploaded to social media. Sharing it publicly gave us valuable confidence in public speaking and reinforced how advocacy can drive real change.

In the evening, we explored the city as a group - enjoying an Italian meal, visiting an Irish bar, and browsing local shops. It was a wonderful opportunity to immerse ourselves in different cultures of the people within the group, share experiences, and strengthen the bonds with each other.

Wednesday; Wednesday was full of learning and inspiration. The morning began with Claas, who gave us an in-depth look at drug development, from discovery and pre-clinical studies to clinical trials, and the vital role of research and ethics. We explored how medications are created, how they affect the body, and the types of studies NF patients can participate in, including the steps involved and the potential benefits and risks. Later, we had a relaxed discussion with other patient advocates, sharing experiences and thoughts on NF and advocacy. It was reassuring to hear how many of us have felt unheard or misunderstood. I focused on highlighting the need for greater awareness of NF in children and young people, particularly within medical and educational settings.

After lunch, Caroline Daly from SpringWorks spoke about disease awareness, education, and empowerment, as well as the company’s approach to ethical drug development and her interest in exploring the condition. SpringWorks have created the ‘NF1-PN Discussion Guide’, a helpful tool for preparing for healthcare appointments. It supports patients who may find it difficult to explain symptoms, track changes, and communicate effectively with healthcare providers.
 

We then met Daniel Munoz Perez, whose research explores the psychological impacts of NF2 and Schwannomatosis. His talk covered body image, coping strategies, social environment, pain, emotional wellbeing, and cognitive performance. It was eye-opening to learn more about NF2 and Schwannomatosis and the unique challenges patients face. In the evening, we took the metro to visit the Sagrada Familia and enjoyed a guided tour of the church and its grounds and learning of it’s history. Learning about Antoni Gaudí’s vision was truly incredible. Funnily enough, there were green and blue stained glass windows, I couldn’t help but see it as a sign - like a light shining on NF was following us.

Thursday; Thursday morning began with an inspiring Zoom session with fellow NTUK ambassador Amit Ghosh, who has NF1. The discussion focused on confidence, resilience, and overcoming barriers, and Amit shared his personal journey of self-acceptance and living with NF. His words were incredibly empowering, and it was clear that everyone in the room could relate to his experiences in some way. He also gave us a practical four-step guide to shifting our mindset and beginning a journey of self-love and acceptance, which left a lasting impression on all of us. Following this, we had a call and presentation with Oriol, who has NF2, about using social media for advocacy. He shared his personal story and how he channels his experiences into creating positive impact.

We then had a session on practical tips on how to use our platforms thoughtfully and effectively, learning how to raise awareness, support others, and amplify the voices of the NF community. In the afternoon, we participated in a podcast session, where some members of the group were interviewed by Karin for social media which Nina De Colle organises. It was fascinating to see a behind-the-scenes look at how podcasts are created, and we expanded our understanding of how to leverage our platforms to reach and inspire others within the NF community. 

The day concluded with our final group dinner, once again sampling authentic Catalan cuisine and enjoying the company of friends we had grown close to over the week. It was a warm, reflective evening - celebrating not just the knowledge we had gained, but also the bonds we had formed and the collective motivation to continue our advocacy work.

Friday, the day of departure; Friday morning began with our final session with the psychologists, which was both reflective and interactive. We took it in turns tossing a ball of string to one another, and as we did, each person shared a recap of their experiences during the academy. It was a beautiful way to visually see the connections we had made and to reflect on how much we had learned and grown together. Every single person agreed that we had formed friendships for life, and that the trip had been not only informative and powerful, but also genuinely fun.

This was followed by the closing ceremony, where the leaders shared heartfelt words about the journey we had all been on. We were presented with our certificates and officially recognised as NF Ambassadors - a moment that felt incredibly rewarding and meaningful. I left the hotel at midday, saying goodbye to everyone was emotional; it was impossible not to feel the weight of leaving such an inspiring group of people who had shared so much knowledge, laughter, and support over the week. Walking away, I felt a mix of gratitude, pride, and motivation to take what I had learned and continue advocating for the NF community.

Interesting facts I learnt

• Medicine is rarely 100% certain - there are still many unanswered questions in medical research about why NF-related conditions manifest differently in each individual. This is why ongoing monitoring and regular check-ups are crucial throughout a patient’s life.

• NF-related conditions are more common than many realise - an estimated 2.5 million people worldwide are affected. While often described as “rare,” these conditions affect a significant number of people globally.

• Testing and research take time - advances in genetic testing have improved understanding, but thorough and accurate research can take 10 - 15 years. There are numerous ongoing tests to evaluate the different comorbidities and complications associated with NF.

• Genetics of NF - NF1 is caused by changes on chromosome 17, and NF2/Schwannomatosis is caused by changes on chromosome 22, and involves other distinct genetic alterations. Each condition is different in its manifestations and management.

Conclusion of the trip

I thoroughly enjoyed my time at the NF Academy with the NFPU. It was not only an opportunity to deepen my knowledge of the condition but also a chance to discover more about myself along the way. The entire experience was truly enriching, and I feel incredibly grateful to have been part of it. Each day brought something new, whether it was learning more about NF from experts, sharing experiences with others who understand the journey firsthand, or finding moments of connection that reminded me of the power of community. Beyond the knowledge gained, this experience gave me the space to grow, both personally and in my role as an ambassador. It reinforced why raising awareness and education is so important, and why having safe spaces like this matters so much. Being surrounded by such passion, energy, and purpose made the academy feel truly special, and it has left me with a renewed sense of motivation to continue this work.

A real highlight for me was getting the chance to practice my Spanish (something I hope to be fluent in one day) while also making new friends from all over the world. I loved learning about different cultures, sharing experiences, and listening to people’s NF stories. What stays with me most is that feeling of being included, involved, inspired and accepted. It wasn’t just about what I learned, but about being part of something truly meaningful that has left a lasting impression.

I would like to thank everyone who made this trip possible, especially Karen Cockburn, Markus Bell, Robert Pierce, Karin Hoogendijk, Micha Artner, and Andre Coy, as well as all the amazing people I met during the Academy for being the most inspiring and powerful ambassadors for NF and who will be friends for life. I feel privileged to have worked alongside them all. I will carry everything I have learned from this experience into my own practice and research, and I will keep fighting in the hope that, one day, we can end NF.