CHARGE Syndrome UK Conference - National Family Day

National Family Weekend


Who

Simon Howard at si_howard@hotmail.com


When

Saturday, October 20, 2018, 9:30 AM until Saturday, October 20, 2018, 7:00 PM

Information

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The UK's CHARGE charity, CHARGE Syndrome Family Support Group (CFSG), would like to invite you to the CHARGE Syndrome UK Conference 2018 - National Family Day.

This will be the largest gathering of CHARGE families in the UK and offers families a chance to meet with each other, attend talks/workshops presented by professionals and other parents, visit informational stalls, and have private consultations with expert professionals in CHARGE on the day. There will also be a Leisure Club for children with CHARGE and their siblings, which provides fantastic sensory-stimulating fun activities throughout the day. And in the evening, everyone is invited to join us for an evening meal and entertainment.

Full details below of the family day below:

Venue

This year's National Family Day will be held in Birmingham, at SENSE Touchbase Pears. Touchbase Pears is owned and run by SENSE (the national deafblind charity) and is a purpose built building for deafblind users. We are excited to hold the conference there for the very first time.

 

Talks & Workshops

There will be a range of talks/workshops on topics aimed for families with CHARGE children at all ages; from newly diagnosed children, to primary and secondary school age children, to individuals moving to adulthood.

We have a fantastic line-up of expert professionals and parent speakers, including:

- Conny Van Ravenswaaij (Geneticist)

- Anne Cheesbrough (MSI)

- Gail Deuce (MSI)

- Carol Thomas (Parent)

- Jeremy Kirk (Endocrinologist and medical adviser to the CFSG)

- Steve Rose (SALT)

- and.... for the very first time we will have a session whereby Adults with CHARGE will be sharing their stories!

 

Meet the Professionals & Consultations

Another first will be the opportunity to meet some of the expert professionals presenting on the Professionals Day (more info on that below) and to have 1:1 consultations with them.

 

Stalls

We also plan to have a range of information stalls inlcuding:

- Auditory Verbal UK - specialises in early intervention for deaf children with additional needs

- Well Child Therapy - specialises in Sensory Processing Disorders

- NDCS - National Deaf Children's Society

- SENSE - a national charity for people with complex communication needs

- Tomcat UK - specialist Trike and Mobility organisation

 

Leisure Club

A Leisure Club will be provided on the day by SENSE. Leisure Club is a chance for children with CHARGE and their siblings to meet each other and to bond over a fun-filled day with sensory-stimulating activites.

There will be activities on-site at Touchbase Pears for children under 5 or for children who wish to stay on-site. For those over 5, there will be planned activities off-site e.g swimming, rock climbing, bowling (to be confirmed).

Leisure Club is run by SENSE trained volunteers and led by team leaders. After you have made your booking for leisure club, SENSE will then contact you directly to discuss your CHARGE child and their sibling(s) requirements and to discuss whether on-site or off-site is most appropriate.

If you have any questions about Leisure Club please read the FAQ at the bottom or contact us on chargeukconference@gmail.com.

IMPORTANT:

There are a limited number of Leisure Club spaces and bookings will be conditional on SENSE's capacity to deliver the activities safely with respect to your child(ren)'s needs. What this means is leisure club bookings are provisional until it is confirmed by SENSE and the CHARGE Family Support Group. We will endeavour to confirm your child(ren)'s place in Leisure Club within 4 weeks over your booking.

Deadline to book Leisure Club tickets is 31st July.

Once Leisure Club is full, SENSE will review the attendees and will release more Leisure Club tickets if they have capacity.

 

Lunch

A picnic lunch (variety of sandwiches, hot finger food items, fruit platters, juice and water) will be provided for parents and conference attendees.

For children in Leisure Club a packed lunch will be provided.

 

Evening Meal and Entertainment

Everyone attending the family day is also invited to the evening meal at Touchbase Pears. As well as being another opportunity for parents and families to speak with each other in a relaxed setting, there will be entertainment for the children, including a BSL signed song performer - Tamara Signed Songs. We would welcome any suggestions to make the evening fun and accessible to all individuals with CHARGE.

 

Accommmodation

There is no accommodation at Touchbase Pears, however we have reserved a set number of rooms at Premier Inn - South Longbridge, which is simple 10 min drive or 15 min bus journey from Touchbase Pears.

- Family Rooms (2 adults 2 children under 15yrs old), Double, Twin, and Accessible rooms available.

- £73/night room only, +£6/adult + £4/child for breakfast.

- Free wifi

- Parking available at a multi-story car park which is 2 min walk from the hotel. £3/24hr.

- Sainsburys, shops and restaurants in the immediate vicinity.

After booking for the conference, you will receive instructions on how to book your room.

 

Cost

Limits

To enable as many families as possible to attend we have set a limit of 3 adults per family (that are going to the conference) and 3 children per family (going to Leisure Club). Please see the FAQ for why.

Grants

We want to make the National Family Day as accessible to all families as possible. To this end, the charity has set aside a fund to help families who may struggle to afford to attend the conference.

To enquire about applying for a grant please email chargeukconference@gmail.com.

Professionals

There are limited number of tickets available for professionals wishing to attend. Tickets for professionals will become availabe from 1st August in order to prioritise families. Tickets will be £50 for the conference and £15 for the evening meal

 

Professionals Day

The day before the National Family Day, Friday 19th October, will be the CHARGE UK Conference - Professionals Day. This is a day aimed at professionals with an interest in CHARGE but a limited number of tickets are also available for parents who wish to attend.

Please note: there will be no Leisure Club provided for the Professionals Day so childcare will need to be arranged by yourselves if you are bringing children.

Accommodation is also available at the Premier Inn (see above) on Thursday night (again, a limited number of rooms available).

Please help us by sharing the Professionals Day event with the professionals that work with your CHARGE child.

For more information and to book a Professionals Day ticket visit http://chargepd2018.eventbrite.co.uk

 

Big Lottery Fund

Thank you to the Big Lottery Fund for their grant to help make the National Family Day possible.

 

Frequently Asked Questions


Venue

Why have you changed the venue from previous years, which had on-site accommodation?

Unfortunately Touchbase Pears does not have on-site accommodation, however it is a purpose built building for deafblind users and staff working there are comfortable and experienced with interacting with deafblind users. There will also not be any other hotel guests walking around the venue throughout the day. Although the hotel is not within walking distance it is only a short, simple drive away.

What if my child gets overwhelmed or needs some 'quiet time' during the conference?

There will be a number of private 'quiet rooms' available for families.

What are my transport/parking options for getting to and from Touchbase Pears?

If you are staying at the Premier Inn South Longbridge hotel, it is a simple 10 min drive to Touchbase Pears. If you're taking bus, the nearest bus stop is Selly Oak Sainsburys which is just opposite the venue. The nearest train station is Selly Oak, which is 3 min walk to the venue and 15 min from Birmingham's central train station, New Street Station.

Is there parking at Touchbase Pears?

Yes, free parking is available.


Cost

Why are you charging this year? Previously families didn't have to pay.

The conference organising committee is made up of primarily CHARGE parents who understand the financial strain of having a child with CHARGE.

However, it costs the charity around £15,000 to put on the conference. This pays for everything including the venue, the catering, the speakers expenses, Leisure Club, entertainment and the evening meal. We have worked really hard to try to keep the cost down to a minimum but it will still cost the charity on average around £100 per person (including children).

I would love to go but I can't afford to, especially with travel and hotel costs.

For those families who can afford the costs we hope they will see it as a contribution that will help fund future conferences and family days. And for those families who simply cannot afford the costs we have set aside a grants fund to make the event as accessible as possible, whatever your financial situation.

To enquire about applying for a grant please contact chargeukconference@gmail.com. However, we ask that you only apply for a grant if you genuinely cannot afford / will struggle to afford to attend.

Why is there a limit on the number of children per family?

We really wish that we could allow all families, no matter what size, to come along. Unfortunately, there is only a capacity of ~90 adults and ~55 children for the conference and to enable as many families as possible to attend, we have reluctantly decided to set a limit of 3 adults and 3 children per family. This is something we will review for next conference.

What if a family has more than 3 children?

Any 'extra' children can come along with you to Birmingham but would need to be looked after off-site by another adult whilst you are at the conference. The conference is in the centre of Birmingham so hopefully there are activities that would be suitable for your children. We could also put you in contact with any other families that have 'extra' children to see if you would like to organise something externally together.

Can my children stay with me instead of using leisure club?

Yes they can. However, if you choose this option please contact us on chargeukconference@gmail.com for further instructions BEFORE BOOKING.

What about extended family members / intervenors that will not be attending talks etc, but is only coming along to help look after the children in Leisure Club?

If they are going to have lunch they will have to pay to attend.

If they are not going to participate in the conference at all or be having lunch, and will ONLY be helping out in leisure club then there is no charge for that person. However, we will need to confirm it with SENSE first so please contact us on chargesyndromeuk@gmail.com if this is your situation.

What's the refund policy?

The following applies to conference tickets, the evening meal, and hotel bookings:

  • Up to September 21 - full refund

  • Between September 21 and October 5 - 50% refund

  • After October 5 - no refund, unless there is a genuine illness in the family that prevents you from attending.


Conference

What is the schedule for the day?

9-945 - Arrival, tea and coffee

945-10 - Leisure Club Drop off

10-1230 - Talks and Workshops / Family meetups in The Hub

1230-130 - Lunch

130-4 - Consultations/Meet the professionals/Organisation stalls/Makaton Taster Stand/Family Meetups

4 - Leisure club Pick up

5-7 - Evening Meal and Entertainment

Is there anything planned for the Sunday?

Currently, no. But we are looking into this and we will let all attendees know as soon as possible.

How do I book for the 1:1 consultations?

You will be contacted closer to the date of the event with instructions on how to book for these.

How do I book for the talks/workshops?

As with previous years there will be concurrent talks, which means you will be asked to choose which talks/workshops you would like to attend. We will contact you closer to the date of the event to ask for your choices.

Will talks be recorded?

Yes, we are planning to record videos of the talks.

I know of an organisation that other families would be interested in knowing more about.

Great! We welcome any and all suggestions. Please contact chargesyndromeuk@gmail.com with your suggestion.

Will lunch be provided?

A picnic lunch (variety of sandwiches, hot finger food items, fruit platters, juice and water) will be provided.

What about evening meal choices?

There will be a set menu for the evening meal. We will contact you closer to the event to confirm your and your child(ren)'s choices and food requirements.


Leisure Club

What happens at Leisure Club?

SENSE Leisure Club will provide activities such as music sessions and sensory rooms on-site at Touchbase Pears for under 5s and CHARGE individuals & siblings who prefer to stay on site. For CHARGE children and siblings over 5, they will be transported via coach for off-site activities e.g. swimming, rock-climbing etc. A risk assessment will be completed for each child by SENSE to ensure that they are safely provided for.

Why am I only allowed 3 children in Leisure Club?

Unfortunately, there are only a limited number of spaces for leisure club and we'd like as many familiies to attend as possible. If your family has more than 3 children we kindly ask that you arrange childcare for the other child(ren) off-site, or care at home. Please contact us on chargeukconference@gmail.com if this is your situation and we will see what we can do.

Can my children stay with me instead of using leisure club?

Yes they can. We will do our utmost to accommodate you and your family. Please contact us on chargeukconference@gmail.com BEFORE booking if you choose this option. 

I have an extended family member / intervenor that does not want to participate in the conference but is only coming along to help look after the child(ren) in Leisure Club?

If they are going to have lunch they will have to pay to attend.

If they are not going to participate in the conference at all or be having lunch, and will ONLY be helping out in leisure club then there is no charge for that person. However, we will need to confirm it with SENSE first so please contact us on chargesyndromeuk@gmail.com if this is your situation.

Why is there a deadline for Leisure Club?

It takes SENSE a lot of planning and risk-assessments to run Leisure Club activities. The deadline to apply for Leisure Club tickets is July 31st, which allows SENSE sufficient time to plan and recruit and train volunteers.

 


Evening Meal and Entertainment

What time does the evening meal finish?

The evening meal will run from 5-7pm. This is earlier than previous years to allow families time to get back to the hotel/home and get their kids to bed!

What entertainment will there be?

At the moment we have got Tamara Signed Songs who will be performing songs in BSL and has experience working with children using Total Communication too. We would like the evening to be fun and accessible to all CHARGE children so if you have any suggestions please contact us on chargeukconference@gmail.com

 


Any Other Questions

If you need help with booking or for any other questions please contact chargeukconference@gmail.com

 

Where

TouchBase Pears
750 Bristol Road
Birmingham
B29 6NA

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