Facebook Twitter Instagram Youtube Linkedin
en_GB English
en_GB English it_IT Italian nl_NL Dutch pt_PT Portuguese fr_FR French es_ES Spanish de_DE German ja Japanese nb_NO Norwegian cs_CZ Czech
Search

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

Book your place here

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.

REGISTER for live stream
Days
Hours
Minutes
Seconds

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.

Download the latest draft program

Sameer Zuberi

Meet the speakers - Professionals

david bentley

David Bentley

David Bentley Chief Scientist, Illumina (UK)

shirlene badger

Shirlene Badger

Shirlene Badger Patient Engagement, Illumina (EMEA)

sameer_for_web.jpg__1964x0_q50_crop_progressive_subsampling-2_upscale

Prof Sameer Zuberi

Prof Sameer Zuberi Paediatric Neurologist, Glasgow (UK)

DSC_1874

Dr Simona Balestrini

Simona Balestrini is Associate Professor of Child Neurology and Psychiatry at the Neuroscience Department, Children's Hospital A. Meyer, and University of Florence. She is also Consultant Neurologist at the Chalfont Centre for Epilepsy and National Hospital for Neurology and Neurosurgery, UCLH, and Senior Clinical Research Fellow at UCL Queen Square Institute of Neurology. She has a special interest in epilepsy genetics, and runs epilepsy clinics and epilepsy genomics clinics in Italy and in the UK. Her current research focuses on the application of next-generation sequencing techniques to understand the causes, course and treatment response of epilepsy, with the ultimate aim to translate the findings directly into personalised treatment.
She qualified in Medicine and completed her specialist training in Neurology at the Polytechnic University of Marche, Ancona, Italy. She was awarded her PhD in Human Health at the same University in 2017.

Dr Simona Balestrini Consultant Neurologist (UK/Italy)

Rhys Thomas

Dr Rhys Thomas

Rhys is a Clinical Senior Lecturer at Newcastle University where he leads an epilepsy clinical research team. Current students are studying epilepsy genetics, the microbiome, epilepsy inequalities and epilepsy related mortality.

He is an Honorary Consultant in Epilepsy at the Royal Victoria Infirmary, where his main interest is in adults with rare genetic epilepsies.

He is an Associate Editor of Practical Neurology, Web Editor of Seizure and is on the editorial board of Clinical Medicine. He is a Trustee for Epilepsy Research UK, Treasurer for the British Branch of the International League Against Epilepsy and a medical advisor for Epilepsy Action.

Dr Rhys Thomas Consultant Neurologist, Newcastle (UK)

Lisa Moore-Ramdin

Lisa Moore-Ramdin

Lisa graduated with a bachelor’s degree in medicine from the University of the West Indies in Trinidad & Tobago and further specialized in paediatrics with an interest in neurology. After a decade of clinical practice within the West Indies and the UK National Health Service (NHS), she obtained her Certificate of Completion of Specialty Training (CCST) in Pharmaceutical Medicine and dedicated the past 15 years to supporting patients by ensuring the right drugs are researched and developed for the right people at the right time. Her career spans various medical affairs roles of increasing seniority at Wyeth, GSK, Merck Serono, Vifor Pharma, Santhera, and latterly GW Pharmaceuticals which is now part of Jazz Pharmaceuticals. In her current role as Senior Director, Global Medical Affairs, she is passionate about enabling the full potential of regulatory approved cannabinoid medicines for patients with rare epilepsies.

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

Isobel Turbin

Lisa Moore-Ramdin

Isobel Turbin Genetic Counsellor (UK)

Hannah Stark_White

Lisa Moore-Ramdin

Hannah Stark NIHR BioResource (UK)

Meet the speakers - Patient Representatives

Allison Watson2

Allison Watson

Allison Watson Ring20 CEO Parent Representative (UK)

Junko-Okuda.jpg

Junko Okuda

Junko Okuda Ring20 Champion Parent representative (USA/Japan)

Lydia Vassallo

Lydia Vassallo

My name is Lydia Vassallo and I am a senior in high school from the Chicago area of the United States. One of my older brothers, Johnny, was diagnosed with first with epilepsy and then r(20) syndrome when he was 4, so it has always been a part of my life. Having attended the Ring20 family meeting in 2017 I was impressed by how little data there was on treatments for Johnny and all the kids with r(20). My hope is that by collecting information and sharing it with you we can see what the impact of various treatments may be on r(20) seizures.

Lydia Vassallo Family representative (USA)

Cindy-Bienkowski.jpg

Cindy Bienkowski

Cindy Bienkowski Ring20 Champion (Belgium)

Yvonne-Goodson.jpg

Yvonne Goodson

My daughter, Lydia, is 21 and was diagnosed with Ring 20 aged 11. I’m taking part in Unravel as I’m hopeful that things could get better for her.

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.
FAMILY ROOMS NOW SOLD OUT

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
Cambridge
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:
© 2021 Ring20 Research and support UK CIO Registered Charity Number 1165651 (England and Wales) SC048893 (Scotland)

Website design by Ginger & Tall.
Hosting kindly donated by 34sp.com

Sign up to our mailing list

en_GB English
en_GB English it_IT Italian nl_NL Dutch pt_PT Portuguese fr_FR French es_ES Spanish de_DE German ja Japanese nb_NO Norwegian cs_CZ Czech
Facebook-f Twitter Instagram Youtube Linkedin
Contact Us