Karen Hillyer, Chair of the Erb’s Palsy Group CIO, sat down with us to tell us more about the charity and this year’s Erb’s Palsy Awareness Week which runs from 27th October.

Q: Karen, can you take us back to when your journey with the Erb’s Palsy began?

Absolutely. When our son Gavin was born way back in 1992, the internet wasn’t around and like 99% of parents, we had no idea what Erb’s Palsy was or how to help him. Information was scarce, and we felt very alone. By chance, a few families met at The Royal National Orthopaedic Hospital in London and formed what would become the Erb’s Palsy Group.  

Q: How did you get involved with the Erb’s Palsy Group?

I joined the Board of Trustees in 1992 and volunteered to produce a newsletter for the members. My First edition was number 5, and we posted it to about 18 families. It was a humble beginning, but it felt important to connect and share.  

Q: Fast forward to today – how has the group evolved?

It’s been quite a journey! In 2025, we’re preparing to release newsletter number 132, which now reaches over 2,000 people via post and email. The growth reflects how far we’ve come in raising awareness and supporting families.  

Q: What challenges do families still face today?

Sadly, babies are still being injured at birth. Many families are still told their child’s arm is likely to recover within 6-8 weeks, but often that’s not the case. It’s frustrating and heartbreaking. However, I’m incredibly grateful that our charity can now offer comprehensive resources and support to those who reach out and make contact with us.  

Q: What strengths have emerged from these struggles?

The strength lies in the community we’ve built and the partnerships we’ve formed with medical and legal professionals. Today, families have access to first-class information – free of charge – thanks to the Erb’s Palsy Group CIO. And yes, I’m very glad the internet is now a thing!  

Q: What message would you share during the Erb’s Palsy Awareness Week 2025?

To every family navigating this journey: you are not alone. The invisible struggles you face are real, but so is your strength. We see it everyday in the resilience of children, parents, and carers. Let’s keep raising awareness and building a future where no one has to face Erb’s Palsy without support.