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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Catherine de Vaal
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 Catherine directly at cdevaal@rarerevolutionmagazine.com

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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Dave Soderquest
Project/Events Manager (Volunteer)

Dave started his professional career with a degree in Chemical and Polymer Engineering from Loughborough University and moved into Information Technology as companies started to introduce computer systems to their factories and offices.

This lead to a very interesting and enjoyable career of developing, managing and supporting business systems and technology in life sciences research and development in pharmaceuticals, the NHS and charities as a Project Manager, Business Analyst and Operations Manager. His favourite project was the implementation of a High Performance Compute (HPC) facility to support genome analysis for the Cambridge Research Institute - a joint development between Cambridge University, Addenbrooke’s Hospital and Cancer Research UK. The technology was easy – arranging to keep the facility cooled when all the systems started data analysis was more interesting.

Now retired (sort of) he has taken on a role of volunteer Project / Events Manager in Ring 20, though can still be seen, on occasions, cycling though the wilds of Essex and has a keen fascination for music, history and science fiction.

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Audrey Everiss
Administration Officer (Volunteer)

Originally from Edinburgh, Audrey has spent much of her working life in administration jobs, employed mostly in local government and the Ministry of Defence. After a severe case of “empty-nest syndrome” when her son left home to join the Army, she decided on a career change and went to university. Five years later, with a degree in Biological and Health Sciences and a Post-Graduate Certificate in Education completed, she began teaching.

Working for Edinburgh College, she started out teaching English, Maths and IT as part of the college’s Literacy and Numeracy Support Team. She then joined their Mental Health Outreach Team and spent the last twelve years teaching the same subjects in community bases in the city to people with mental health problems.

She retired recently and moved to Colchester to be close to her son and his family.

Although new to the voluntary sector, Audrey is very keen to offer her skills to Ring20 at what appears to be a very busy and exciting time in its journey.

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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.