As an ambassador for the MPS Society, Helen recently attended the International MPS Conference in Florence. Focussed on representing our community to the best of her abilities, Helen reflects on the highlights of her trip.
It was an experience that was both inspiring and deeply moving, which has left a lasting impression on me.
Hearing from leading medical professionals provided valuable insight into current research and emerging treatments while acknowledging the old challenges that still exist and the new emerging issues young adults are now dealing with.
In the face of the unrelenting effects of these conditions, it was encouraging to see the level of dedication and expertise being applied to improving outcomes for our children and young adults living with all forms of MPS.
However, it was the families themselves who made the greatest impact on me.
I met parents, carers, affected children and adults from many different countries, each with their own story to tell. Despite the differences in language and culture, there was a remarkable sense of shared understanding, empathy and compassion.
Every family was navigating challenges that many people outside of our rare community will never be able to fully appreciate.
Yet, upon hearing their stories, most of which were very emotional, I also witnessed their extraordinary resilience, determination and endless hope. Some of the conversations I had were incredibly uplifting and inspiring.
I met Rachel, who lives with MPS IV Morquio. She travelled alone from her home in Malaysia to study law in England and lived alone in university halls of residence for three years. She now works as a Practice Lead for a Malaysian innovator of Legal AI business solutions.
It was a delight to meet Jocelyn, BA in Art, who now lives in America and works as Secretary for the MPS IV Morquio Community USA. She is fluent in three languages, provides support to Asian families living with MPS and translates MPS disease medical information from English to Chinese.
I also had the pleasure to meet Adrian and his lovely wife, Eliza. Adrian lives with MPS II Hunter and works as a consultant in the healthcare sector providing expertise that serves patients living with rare diseases to access practical solutions.
It was truly an honour to spend time with these amazing people.
Many families from all over the world spoke to me of progress, milestones achieved and opportunities created through access to specialist care and therapies.
Others shared stories that were much more difficult to hear. I met parents carrying the emotional weight of knowing that their children are unable to access the specialised surgeries they require. I listened and offered comfort as they spoke of their inability to find MPS experienced surgeons in countries such as Italy, Switzerland, Croatia and Australia. Listening to these parents was both humbling and heart-breaking.
The conference highlighted the inequalities that exist across the healthcare systems around the world.
For these families, their MPS journey involves not only caring for their child but also advocating tirelessly for treatment, funding and support. Their strength and perseverance has left a profound impression on me.
What I will remember most from Florence is the power of human connection. Over the course of a few days, strangers became friends through shared experiences, compassion and mutual understanding.
As both a parent and an ambassador for the MPS Society, I returned home with a renewed sense of purpose. My experiences in Florence reinforced the importance of advocacy, awareness and continued investment in research and specialist care and the critical need for improved medical training, increase in medical recruitment and the levelling of global MPS care inequalities.
I was also reminded that while medical advances are crucial, the strength of our rare community lies in the people within it, the families, clinicians, researchers and supporters who work tirelessly to improve lives affected by MPS.
Florence was more than a conference destination. It was a global community united by shared challenges and a common goal;
to create a better future for affected children and young adults.
The MPS Society UK was repeatedly described to me by families from all over the world, as the global gold standard for all societies to emulate. I agree and I am grateful for the opportunity to represent our charity, and am more determined than ever to contribute to the important work that lies ahead.
