Our support officers
Meet the support team who enable us to support over 1500 families each year!
As the only charity supporting individuals and families affected by MPS, Fabry or a related disease in the UK, we offer the specialist support, information and advocacy that our community needs to make informed decisions, whether about treatment, education or benefits.
We enhance our services with personal experiences, access to a community of peer support and collaboration with healthcare professionals. Every year we reach 1,500 families and recently experienced a 12.6% increase in demand for our services. Our support and advocacy teamwork across the UK, averaging 2,655 miles per month visiting our members and provide them with vital support and advocacy.
From a single advocacy officer, back in 1986 funded by BBC Children in Need, covering the whole of the UK, the Society’s highly skilled advocacy team and supports over 1,500 families and individuals in all aspects of social care as well as access to special educational needs and clinical management.
"I am proud to head up the advocacy team, having worked as a support officer for many years I understand the determination and expertise required to support our families.
Supporting children, young people and adults affected by MPS, Fabry and related conditions and their families is at the heart of what we do, and so we strive to provide a responsive service that gives people the help they need when they need it.
We are often able to make a positive difference to the lives of our community and this gives a real sense of achievement."
"Knowing that we are living in times where getting even basic needs (and rights met) is so hard, I understand completely how it can get members and their families down. The continuous minefield of how to go about getting anything sorted is enough to make people give up.
Being part of a service that supports members and their families to achieve their needs and hopefully, take a share of the burden in doing so, is a great feeling.
When I get a call or email telling me their issue has moved forward as a result of our support, it makes me realise that even when it is hard and complicated, it ultimately is worth it and we move on to fight another day together!"
"My name is Hannah and I’m the newest Advocacy and Support Officer at MPS Society. My background has been working as a statutory advocate within the mental health and learning disabilities sector. I recognize the difficulties and barriers that families face to get the support they need. I’m looking forward to working with individuals and families to hopefully take some of the burdens off and support them along the way, most importantly reaching the positive outcomes they deserve.
I will be working alongside Rebecca with supporting members and families affected by MPS II (Hunter) and Steve with MPS III (Sanfilippo).”
"I am the All Ireland Advocacy and Support Officer and Genetic Counsellor for the MPS Society.
I have a background in genetics (at BSc and MSc level) and a special interest in lysosomal storage disorders and rare diseases."
"I’m Donna and I'm the new Advocacy and Support Officer for the MPS Society. My background has mainly revolved around the healthcare sector, and I spent many years working in retail banking and customer service. I am also a Registered Nurse and prior to starting with the MPS Society, I worked in a hospice, dealing with symptom management, palliative and end of life care, for patients with life-limiting conditions and diseases.
I will be working with the Fabry community and with the Metachromatic Leukodystrophy (MLD) community. I'm very much looking forward to supporting everyone at the MPS Society and will hopefully meet some of you soon."
Our helpline is open 9-5pm Monday-Friday: 0345 389 9901
Out of hours support line open 5pm-10pm Monday-Friday and weekends: 07712 653 258 or email us at: email@example.com