Conference session information

To help you settle in and meet other newly diagnosed families, we’d love to welcome you an introductory session at 9am, before the main conference kicks off.

Three of our lovely Duchenne parents, Shelley, Sam and Lynnette will be at the informal meeting to make you feel at ease.

It will be lovely to meet as many of you as possible, please do contact us info@actionduchenne.org if you have any questions or reservations.

We have included a new session at our International Conference this year entitled ‘Carriers: Reproduction’ – this session will focus on the genetics of Duchenne muscular dystrophy for those who are carriers of the Duchenne gene and provide a clear explanation of how the condition is inherited in families.

Often, when Duchenne is diagnosed at a young age, parents have plans to add to their family. We know that this decision feels more difficult following a diagnosis and that’s why we hope this session, which includes information on IVF with PGD (pre-implantation genetic diagnosis), will help to make decisions around family planning clearer.

This session will be hosted by Dr Michela Guglieri of the John Walton Muscular Dystrophy Research Centre.

Sibs is the UK charity for brothers and sisters of disabled children and adults.

We are honoured to welcome Sibs to our conference, who will be with us lending their expertise to our ‘Sibling Stories’ session on Friday 15 November. Sibs will be accompanied on the panel by siblings from the Duchenne muscular dystrophy community who will share their experiences with the audience.

Last year, our siblings session was standing room only, with Duchenne parents, siblings, and families forming the large audience. We recommend you arrive in good time for this session as we anticipate it to be very busy again this year.

Saturday morning will see the return of the ‘Company Update’ session – Professors Francesco Muntoni (UCL) and Volker Straub (Newcastle) have been the lead investigators in many of the Duchenne clinical trials within the UK.

They will host a session of updates from the companies developing treatments for Duchenne.

The DMD Pathfinders are an organisation set up by adults living with Duchenne, for adults living with Duchenne.

On Saturday 16 November, we are pleased to welcome the DMD Pathfinders at the Conference as they deliver a day full of sessions covering important topics such as;

* Recruiting a PA
* Getting out and about with Duchenne
* Finding a job
* Research for adults with Duchenne
* Transport
* Getting your own home
* Interacting socially

The room is open to everyone (people living with Duchenne and families alike) and the Pathfinders will be delighted to welcome you all to join them.

Once you’ve grabbed a cup of coffee, met up with friends old and new, and settled into the Conference on Saturday 16th, come and hear our very own Angela Stringer speak about our Duchenne Education Programme, Purple Mash, alongside Project Lead and Duchenne Parent, Alban Squires.

Purple Mash is a powerful educational learning environment designed for primary aged children. It contains 1000s of premade resources to support learning; perfectly aligned to the National Curriculum. We partnered with Purple Mash earlier this year to provide our community with free access to this amazing system via the ‘Action Duchenne School’. Angela and Alban will give you hints and tips about how to make the most of the system to help support your childrens’ learning at school.

Hot on the heels of the powerful and highly informative webinar we brought to you earlier this year, we are delighted to welcome Dr David Schonfeld back to this year’s Conference.

David is a regular presenter at the Action Duchenne International Conference, hosting his hugely popular and insightful ‘Talking with your children about Duchenne’ session.

This year, the session will be a bit different. Taking place on Saturday 16 November at 9.30am it will combine David’s humourous, engaging, though-provoking presenting style in a workshop, exploring common themes and discussing the audience’s questions.

Expect to hear topics covered including;

• When should we start the conversation with our boys? What if we already waited too long?
• How do we start the conversation?
• What’s enough information? What’s too much?
• How do we help them cope with the limitations and uncertainty related to DMD?
• How do we make sure our son is defined by more than his condition?
• How do we support ourselves?
• What about his hopes and dreams related to Duchenne and his health?
• What about my hopes and dreams?

Another familiar face will be returning to the Action Duchenne International Conference this year – Dr James Poysky.

He will present his popular and renowned session, ‘Learning and Behaviour in Duchenne’. This is one of the most well attended sessions, giving parents the skills to manage the day to day living with Duchenne.

Jose was trained in Brazil where he worked with two people living with Duchenne as a Junior Physiotherapist.

Jose’s work took him to Switzerland and Australia working with children living with a range of disabilities and conditions. Jose has spent the last three years working exclusively with patients with neuromuscular conditions, at Great Ormond Street Hospital.

GOSH has one of the largest cohorts of Duchenne muscular dystrophy patients in the country giving Jose a vast experience working in the physio field of Duchenne muscular dystrophy

Join Jane O’Connor and our very own Angela and Lynnette in the ‘Practical tips’ session immediately after the ‘Newly diagnosed breakfast’ and ‘Duchenne 101’ sessions.

Helpful for all families, in particular if you are new to the Duchenne community, you will get invaluable tips from this session including; building your team around you, advocating at school, adaptations, wheelchairs, learning and behaviour, what to expect and when, and where to find help.

Join Jatin Pattni for this important session on Saturday 16 November.

Jatin says “I am a neuropsychologist based within the neuromuscular service at Queen Square. I work with adults and patients transitioning to the adult services using a range of approaches. In 2017 I completed an audit to identify the needs of young patients transition to Queen square. This led me to start the Young Persons group. The aims of this group are to help young patients develop a support network, provide information by inviting speakers and organising workshops and perhaps most importantly to encourage and support young patients to try new things and challenges.”

We are pleased to offer you the chance to book free childcare over the Conference weekend.

We have been busy organising a fantastic line up for this years Hang Out (10-18 year olds). Circus skills, Music, Gaming and Mad Science are just some of the wonderful sessions our teenagers and their siblings have to look forward to.

For our younger ones (ages 2-9) the lovely team from Jack in the Box are on hand!

When you book your Conference tickets, you will be given the option to choose one of the childcare options, depending on your child’s age.

The Hang Out

The Hang Out has grown from strength to strength over the past 3 years, with individuals and organisations chomping at the bit to come and share their skills and expertise with our teenagers and their siblings.

Friday 15 November

Join the amazing team from Rokzkool4U and have fun whilst learning about music, get to grips with some of the awesome instruments they’ll be bringing with them, which includes keyboards, guitars and a full drum kit! (just to name a few!)

You’ll learn about rhythm, how to construct a song from writing to performing through a series of activities throughout the day – it’s going to be epic! #ADrockschool #drums #music #kidswhorock #letthekidsboogie #ADConf19 #HangOut

Saturday 16 November

09.00 – 12.30

Roll up, Roll up, Roll up! Circus Allstars will be joining us in the ‘Hang Out’ for their inclusive circus skills workshop, where you’ll be able to try a variety of new and exciting skills including juggling, hula hoop, stilts, spinning plates and much much more!

13.45 – 15.00

The phenomenal Dragons’ Den winning Sublime Science will be wowing us with everything from bubbling potions and yummy sweets to spectacular science experiments.

15.00 – 16.45

They’ll be something for everyone including classic board games, puzzles, arts and crafts and LEGO.