Kim Parks
Treasurer (Volunteer)
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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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Sam Dwinell
Bid Writing Manager (Volunteer)

Sam Dwinell has a professional background in academia and a volunteer background in third-sector fundraising, grant-writing, and communications. After earning a Ph.D. in music history from Cornell University, he pursued an academic career, working as a professor and a researcher in several different universities in the United States. He has worked as a fundraising volunteer with social welfare and community charities in the U.S., and he currently volunteers in fundraising roles with a number of community, education, and social welfare charities based in the U.K., including Ring20.

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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.

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.

Jonathon Dunn
r(20) map and website support (Volunteer)

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.

Gemma Underwood
Bid Writing (Volunteer Consultant)

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 Ring20 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

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