Kim Parks
Treasurer (Volunteer)
Gemma Underwood
Fundraising Manager (Volunteer)

Gemma Underwood (MInstF) has over 13 years’ experience working in the voluntary sector, for small, medium and large charities, providing a wide range of services to vulnerable people. Specialising in trust, statutory and corporate fundraising Gemma has also undertaken Head of Fundraising roles with responsibility for managing multiple fundraising income streams. As a consultant Gemma now develops fundraising strategies and submits high quality funding applications for charities across the sector.

Having been diagnosed with an unrelated, genetic condition in 2009, Gemma is keenly aware of the importance of research into rare conditions and having established a fundraising consultancy in 2015 was keen to support a dynamic local charity in championing this cause.

Ring 20 Research Support UK CIO provided an ideal opportunity and Gemma is now our Volunteer Fundraising Manager with responsibility for developing fundraising strategy, submitting funding applications and managing fundraising activities. As a member of the Institute of Fundraising Gemma is committed to adhering to the codes of fundraising practice in all fundraising activities.

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Nicola Miller
RARE Communications

RARE Communications support us with our  day-to-day communications across our social media platforms and our weekly e-news. RARE Communications are the same great team who delivery RARE Revolution Magazine (all powered by the not-for-profit organisation NRG Collective Ltd) and come with a wealth of experience in the charity sector running both a rare disease charity and not-for-profit. If you would like to suggest topic, or submit a contribution to our Ring20 communications you can email Nicola Miller directly at nmiller@nrgcollective.co.uk

Nik Singh
Project/Events Manager (Volunteer)

Nik has recently joined the team to help us with the planning and organisation for our Research project and future r(20) families event(s).

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Luiza Grabska
Administration Officer (Volunteer)

Luiza is deputy manager of the local branch of Oxfam and has recently joined the team to help out with our varied administration duties.

Dale Ward
Fundraising and r(20) Advocate (Volunteer)

Dale is an r(20) advocate and attends events/hosts stands for us, typically in Wales (Cardiff) area.

Jonathon Dunn
r(20) map and website support

Jon is the father of Kieran who was diagnosed with Ring20 when he was 5.  Jon helps support the technical side of the website and maintains the Ring20 map.

Dawn Gray
Fundraising and r(20) Advocate (Volunteer)

I am the mother of Callum, diagnosed with r(20) when he was 7 years old – some 10 years ago. He started with absence seizures which then developed into longer complex partial absences and had to be admitted to Gloucester Royal hospital after having 7 hour seizure. When Callum was 11 he went on the ketogenic diet; high fat, very low carbs. After 10 days he was more alert and after 6 months he came off all medication (he did the diet for 2 years and 2 months). We had a year and a half of him being seizure free and drug free. After the recommended time and Callum becoming a difficult teenager we came off the diet. The seizures started coming back one a week about 10 mins duration initially so he was put onto Acetazolamide but despite upping the dose  he is still having daily seizures last 5 to 15 mins. Now Callum is in transition period and waiting for an appointment in Gloucester. Callum struggles with learning but enjoys 6th form at school. His behaviour can be very challenging at home. We hope he can go into catering, though heat and cold extreme seen to trigger of seizures.

I volunteer for Ring20 Research and Support UK CIO because I want to help. Callum and I have represented the group at Birmingham Children’s Hospital on a number of occasions and we have undertaken various fundraising activities from a fundraising cake sale afternoon, to Christmas and Easter raffles and putting out collection boxes.

Jamie Gray
Duke of Edinburgh (Volunteer)

Jamie is the younger brother of Callum who has r(20) syndrome. 

Jamie is helping us out as part of his Duke of Edinburgh Award.