Past & Current Events

In May 2023, the Children’s Hyperinsulinism Charity hosted our Family Conference and Fun Day.

Our Three Key Objectives:

During our event, we aimed to achieve three key objectives that would benefit families dealing with Hyperinsulinism.

Provide a comprehensive agenda that covers all aspects of Hyperinsulinism, including genetics, feeding issues, physiotherapy, and developmental issues. We were fortunate to have the support of the three UK HI Specialist teams from GOSH, Royal Manchester Children’s Hospital and Alder Hey, as well as the Exeter Genetic Team. We also included opportunities for families to interact with professionals and to ask the experts questions.

Provide families with the necessary information and resources to empower them in meeting their child’s needs effectively, both at home, in the community, and within educational environments. We enlisted the help of several experts, including Steve Broach (Barrister), Karen Hoe OBE, and Maria Williams (Contact Charity advisors) Their invaluable insights helped families gain a comprehensive understanding of the financial benefits and available support systems, whilst also guiding them on the steps required to access these resources.

Offer emotional support to individuals with Hyperinsulinism and their families, focusing on their well-being and providing practical advice and strategies for children with emotional, behavioural, and developmental issues. We had a series of presentations and mindfulness coaching sessions from experts, including Loraine Midda MBE, Caroline Wilson (Mindfulness In Schools Project), Professor Alice Jones- Bartoli for her exceptional work on supporting children with behavioural and emotional difficulties, and Dr. G iri Santhanam and Kat Sturgeon to look at early years development a nd how to access support for neurological conditions in the community. We had a special presentation from Sir Al Aynsley Green, who emphasised the importance of compassionate care.

Then of course, we ensured our CHI children were provided with a full day of entertainment, plenty of opportunities to play and network with other HI children and their siblings, and a fun day at Drayton Manor theme park.

Family Feedback on the Conference

We feel the most important way to evaluate our conference is from family comments:

“An excellently organised day which was both informative and fun. Really appreciated the entertainment organised for the kids also!”

“The sessions were well organised, and succinct which is key. The fact that it is recorded and fully accessible afterwards is very useful indeed.”

“The event was very well organised and very informative.”

“Sir Al Aynsley Green was a breath of fresh air, appears very approachable, and provided a real insight into how a person/family feels when faced with difficult decisions.

All very relevant topics on the agenda and excellent organisation. The conference was excellent!”

“Genetics – going forwards/research updates and clinical trials. Glycaemic index and CHI. Developmental concern”

“Just spending time together as families outside the hospital environment was incredible and legal barrister video, CGM all my favourites.”

For more family feedback see our YouTube family videos: https://hyperinsulinism.co.uk/news-events/video/