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Final Programme 2023

Friday 17th November

From 3.00

Registration

4.00 - 4.15

First timers welcome talk - Karina Lear & Jo Bennet (Butterly 1)

5.30 - 7.00

Dinner

6.15 - 8.00

Meet and Mingles
- Adults with Albinism (Bar)
- Board games for all ages (Butterly 2)
- Kids 10+ and teens - get to know each other (Buttlery 1

Spend some time with people in the same stage as life as you. The guided conversations give you a way to meet others, without having to worry about awkward conversation starters. 

6.00 - 7.40

Nipperbout registrations for Kids and Teens (Oragngery)

7.40 - 8.00 

Nipperbout Q and A (Butterly 1)

This is for our parents, carers and young people to meet the lead at Nipperabout. This is an opportunity to ask all the questions and understand how your children will be cared for. 

8.00 - 9ish 

Quiz (Butterly 1)

This very interactive quiz is open to all, but be prepared to shapes, draw and probably shout your way to a win! 

8.00 till late 

Free chatting time till late (Bar)

Saturday 18th November

8.00 - 9.00

Breakfast

9.00

Day visitors arrive 


Nipperbout opens (Derbyshire)

9.30

Welcome and how the Conference will work - Karina Lear (Butterly 1)

9.40

The Basics of Albinism - Helena Lee and Jay Self (Butterly 2)

This interactive session will explore what albinism is; how it's caused and why this causes visual impairment, and how this can be used to develop effective treatments.

Presentation

PIP / DLA for children - Erick (Butterly 1) 

Disability Living Allowance for children with albinism, including advice on completing an application.

Paint by colours (Derbyshire 7, top floor)

Relax as you paint and chat about life with Albinsim

10.30

Break including Cake

11.00

Breakthrough in science - Helena Lee and Jay Self (Butterly 2)

Presentation
 

PIP / DLA for adults - Erik (Butterly 1)

Personal Independence Payments for adults with albinism, including advice on completing an application.

Photoshoots for adults - (Derbyshire 8, topfloor)

12.00

Lunch


(Nipperbout closes at 12.05)

1.30

(Nipperbout reopens at 1.20)


Orthoptist and My Child - Gemma (Butterly 1)

Mobility - Jenny  Lane (Butterly 2) 

Presentation

Teens and Adults discussion group - Karina (Derbyshire 7, topfloor)

This is a shorter session of 20 minutes designed to introduce our Year 10 and above to the workings of the conference and how to actively participate in discussions. 

Scavenge hunt in the grounds (Meet in the bar) 

2.15

Nystagmus: All you could ever wnat to know - Sue Ricketts and Gemma (Derbyshire 7, topfloor)


Plain Speaking: How a visual impairment can impact upon communication milestones - Sinead Fitzpatrick from ChildVision (Butterly 2) 

Presentation


Dermatology: The Albinism Mum and Dermatology Nurse Perspective- Joanne Foley (Butterly 1) 

Presentation

Joanne is here to answer all the questions you have about dermatology / skin care that she has learnt both in her job as a Dermatology nurse and raising a son with Albinism

3.00

Break including cake

3.30

Moving on from school  - Tara Chattaway and Rosie Dempsey (Butterly 1)

Presentation

Moving on from school can be daunting for young people with vision impairment and their parents. In this workshop, we’ll discuss support, resources and services that can be useful in the planning process. 

Let's talk appointments for Teens - Gemma (Butterly 2) 

This session is exclusively for Teen to talk through all the various appointments people with Albinism have to go through, giving them confidence to know what is happening and what to ask. 


BAME Community - Akeel and Eshita (Derbyshire 7, topfloor)

A discussion around the challenges faced by people with albinism from different cultural  backgrounds. Looking at ways to break down these barriers. Please note: This session is only appropriate for Black, Asian and minority ethnic attendees.

What we see - Kristina (Derbyshire 8, top floor)

If you look at the list of eye conditions associated with albinism, you might think the prognosis is bleak. Using images and illustrations, Kristina Venning Rose will show you that this is not the case at all!

4.15

Practical Parenting - Hints and Tips (All in Butterly 1)

- Pre-school by Helen and Gemma 

- Primary School aged by Rosie

- Secondary School aged by Jo

The right to reasonable work adjustments and the future of the process - Sophie from Thinkedi (Butterly 2)

Presentation

Join Sophie as she guides us through the process of reasonable adjustment in the work place and how the app she is building could help to ease the process

Teens Photoshop (Derbyshire 8, topfloor) 

This is a chance for teens to have a photos shoot with their friends. Year 8 and 9. This will be chaperoned by Nipperbout.  

5.00

Nipperbout closes

6.00 - 7.00

Dinner 

7.30 - 9.00

Albinism got Talent and Newspaper Fashion Show (Butterly 1 + 2)

5.30 till late

Bar is open till late

Sunday 19th November

8.00 - 9.00

Breakfast

8.45

Nipperbout opens (Derbyshire)

9.15

Get involved with the Conference - Find out how you can support the charity 

9.30

All to have left rooms (Luggage room available

Keynote: David Katz  (Butterly 1 + 2)

David Katz is an Internationally acclaimed photojournalist, who in 1986 at just 19 years old was already working at the Daily Mail Newspaper. He quickly built a reputation as one of the top Sports photographers in the British National Press and has photographed presidents, prime ministers, royalty and celebrities and in 2007, was appointed as Benjamin Netanyahu’s personal photographer. However, it wasn’t until 2017 that David spoke publicly about having Albinism and Nystagmus, and being legally blind from birth. In 2019,

10.15

Break including Cake

10.35

"TED talks" on Trhving (Butterly 1 + 2)

A selection of people with Albinism are going to amaze you for a few minutes talking about how they Thrive with Albinism. You will then have the opportunity to join a table with each of these speakers to dive deeper into how they thriving. 

11.15

Break

11.45

Teenagers showcase (Butterly 1 + 2) 

The teenagers have been given a space and opportunity to share what they have been getting-up to through out the weekend. 

12.15

Closing remarks - Karina Lear (Butterly 1 + 2)

12.30

Lunch 

Nipperabout closes 

2.00

Family Goalball session 

Family photos shot (Needs booking) 

3.00

All depart 

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