Ring20 Families Conference 2022

Announcing our Ring20 Families Conference weekend! 
This will be the 2nd-ever conference dedicated to r(20) families across the world – you don’t want to miss this. We have a full program planned including updates on r(20) research projects from eminent speakers, Q&A with our genetic counsellor, the latest epilepsy treatments and what hope for r(20), wellbeing and fun activities for all the family and of course, the unique opportunity to spend lots of time with other r(20) families going through very similar challenges.

SAVE THE DATE 23-25 Sept 2022 Cambridge, UK

Can't attend in person?

No problem, we are running this as a hybrid event so you can follow LIVE or watch the recordings later.


Highlights include:

Welcome Reception
drinks and canapes
Friday evening

Speaker program (Saturday):

  • Genomic research
  • Natural History Study

Q&A (Saturday)

  • panel discussion on treatments
  • Ask the Genetic Counsellor

Lab tour
At the Wellcome Sanger Institute - world-leading genomics research institute

3-course Gala Dinner
Saturday evening

Wellbeing activities
and family fun

Unique opportunity to spend lots of time with other r(20) families going through very similar challenges

FREE hotel accommodation
for the first twenty r(20) families
- 1 room per family

Main Program

Details of the full program for the weekend will be released nearer the time, but for now here’s a taster of what’s to come.

Key speakers:

  • Prof Sameer Zuberi, Paediatric Neurologist Glasgow Children’s Hospital
     – Ring20 Natural History & Biomarker Study
  • David Bentley, Chief Scientist Illumina
     – Genomics research project
  • Dr Simona Balestrini, Consultant Neurologist UCL, London and Italy
    Emerging treatments – what hope for r(20) syndrome? (panel lead)
  • Dr Rhys Thomas, Consultant Neurologist, Newcastle
  • Lisa Moore-Ramdin, Jazz Pharma,UK

You can attend the whole weekend, or just join for the Saturday speaker presentations and discussion – the choice is yours.

Meet the speakers - Professionals

david bentley

David Bentley Chief Scientist, Illumina (UK)

shirlene badger

Shirlene Badger Patient Engagement, Illumina (EMEA)


Prof Sameer Zuberi Paediatric Neurologist, Glasgow (UK)


Dr Simona Balestrini Consultant Neurologist (UK/Italy)

Rhys Thomas

Dr Rhys Thomas Consultant Neurologist, Newcastle (UK)

Lisa Moore-Ramdin

Lisa Moore-Ramdin Global Medical Affairs Jazz Pharma (UK)

Isobel Turbin

Isobel Turbin Genetic Counsellor (UK)

Hannah Stark_White

Hannah Stark NIHR BioResource (UK)

Meet the speakers - Patient Representatives

Allison Watson2

Allison Watson Ring20 CEO Parent Representative (UK)


Junko Okuda Ring20 Champion Parent representative (USA/Japan)

Lydia Vassallo

Lydia Vassallo Family representative (USA)


Cindy Bienkowski Ring20 Champion (Belgium)


Yvonne Goodson Ring20 Champion (UK)

Hotel Accommodation

The Best Western Premier Collection Quy Mill Hotel & Spa, Cambridge CB25 9AF – a 4* hotel located outside of the city centre – will be our main base for the weekend.
Guests can enjoy the onsite pool facilities, gym and mini golf included in their stay.

We have 20 rooms reserved, including a selection of twin, double and family rooms. There is 1 room with full wet room access. Rooms will be allocated on a first come, first served basis on registration.

Best Western Premier Collection Quy Mill Hotel & Spa, Cambridge

Alternative Accommodation in the local area

Once our allocation of hotel rooms at the Quy Mill has been filled, we have some (limited) additional capacity for  a few more families and healthcare professionals to attend some or all of the weekend event – subject to ticket availability. If you want to stay over in Cambridge you may find rooms available (at your own cost) at the following nearby hotels:

Directions and transport links

Our main base will be the Quy Mill hotel located just off the A14 to the north east of Cambridge city centre.

Quy Mill hotel is 31 miles from London Stansted airport.

On the Saturday the main event will take place at:
Illumina EMEA Head Office
Granta Park
CB21 6DF

Transport to/from Quy Mill to Granta Park/Wellcome Sanger Institute will be provided to all attendees.

Frequently asked questions

Here are some of the questions you might ask about our Families Conference weekend:

Yes, this event is open to people living with r(20) and their families. We also welcome healthcare professionals adn industry/pharma companies with an interest in complex epilepsy. 
As spaces are limited, places will be given to those with r(20) and their immediate family as a priority.

We are still working on ticket pricing, but tickets for the person with an r(20) diagnosis will be free.

No, we have 30 rooms reserved for this event at the Quy Mill hotel, so we will allocate you a room when you register (if you wish to stay over). One room will be made available per family. There are a selection of twin/double and family (2 adults+2 children) rooms available. We will try our best to accommodate your requirements.

Ring20 will make a contribution towards hotel room costs.
One room allocation per r(20) family attending for 2 nights (Fri and Sat).

We encourage our families to spend the weekend with us, however if you live close by and/or only wish to attend for the day on the Saturday, then you can join us simply for the main daytime program at Granta Park.

We are putting together a program that we hope will have something for all ages and abilities. Please note: parents/carers will remain the responsibility of their own children at all times.

We hope that we will be able to livestream the main presentations on the Saturday – to be confirmed…
If so, we will provide details of how you can register to participate live online

We hope to be recording the sessions on the Saturday during the day so that we can share them on our website and YouTube channel after the event…to be confirmed.

All hotel bedrooms are on the ground floor and allow access for wheelchairs. Also the Garden Room for the Fri/Sat evenings is on the ground floor.
There is only 1 bedroom with full wet room access.
Granta Park is wheelchair accessible.

Got more questions?

We’d be happy to answer them. Send us a brief message below 

Sponsor opportunities

We have Silver and Bronze sponsorship opportunities still available.

We also have space for a few exhibitors, so if you have goods, services or information relating to managing complex epilepsy and associated comorbidities that might be of interest to our families, then do get in touch.

Contact Allison by sending a request below for more details or download our sponsorship leaflet here.

BIG thank you to our event sponsors: