A conference for everyone
We sang together. We learned something new. We caught up with old friends and made new ones. There was fun and laughter. And serious discussion. There was play time for younger members (and some of the older “kids”, too!). There were good times – and even a few tears. Dancing? Yes, that happened too! The Albinism Fellowship’s “This is me” Conference was highly memorable and enjoyable for all the right reasons, writes Andrew Bennett, P.R. advisor for the Albinism Fellowship
This was us
Our members returned to Derbyshire for the third time in October for our latest Conference. While there wasn’t much sunshine during a packed weekend of activities, we received as warm a welcome as ever from the Hayes Conference team. And the venue near Alfreton proved to be perfect for a busy 48 hours of albinism.
Counting our speakers and conference exhibitors, there were over 200 delegates for This is Me. Long-time Albinism Fellowship members might correct me, but surely this is some sort of record?
But it wasn’t just about the overall numbers. In keeping with the title, This is Me was all about celebrating life with albinism and taking a positive approach.
So, as well as a sizeable contingent from our core membership base in the UK and Republic of Ireland, we welcome visitors from around the world, including the United States and France.
This was business
There were conference sessions to suit pretty much all tastes. This was my fifth conference and I’m still struck by the fact that there is always something new to learn about albinism and topics related to it.
If you wanted to meet other adults with albinism and discuss hot issues and life hacks, that was possible. For teenagers and adults, there was a guide to make up by No:7 - I’m told this can be a real issue for women with albinism.
Those who craved an adventurous activity had their wish fulfilled with a trip to Derbyshire Activity Centre and families and young people could try out the running line (specially designed for the visually impaired) or goal ball. We made it all happen.
Meanwhile, eye specialists and researchers Mr Jay Self and Dr Helena Lee hosted a medical session covering the basics of the causes of albinism. Experts from Guide Dogs talked about how to work with habilitation specialists to maximise the mobility of your child.
On the Saturday, Mike Hughes advised on Personal Independence Payment for adults with Albinism. And let’s not forget the work of our choirmaster Adam Knott in coaching all our singers over the weekend for the finale – a rendition of This is Me – at the end of the conference. Thanks, Adam!
Asma Bari and Precious Toe, meanwhile, staged a session called ‘Breaking down barriers’ which was a discussion around the challenges faced by people with albinism from different cultural backgrounds.
That’s just a flavour of the conference sessions. They were many, varied and well attended. If you like me, you were at the conference, I hope you got lots out of them.
This was fun
Fancy dress and dancing fans were well catered for on Friday night with our traditional Conference disco. And for those hungry for more dance floor action, the barn dance saw many of our delegates swinging through the steps (with or without Stetsons on).
This was personal
It was great that this year, our Conference attracted many first timers, both people with albinism themselves, and the parents of children with albinism.
Gareth Brydon, who works for Thomas Pocklington Trust, is an adult with albinism and one of those same first-time delegates.
“Over the two days I was amazed by the people I met, stories I heard, and things I learnt. Aside from the positive atmosphere, sense of community, and warmth throughout I was also struck by the power of albinism in bringing together people from across the world in rural Derbyshire to share with one another and stand up proudly to say; ‘This is Me!,” said Gareth.
“I’m already looking forward to the next conference in 2021 and hope to get more involved with the Fellowship generally. Thanks to all involved for an incredible weekend!”
Take a look at Gareth’s blog about his experiences at our 2019 Conference.
And this is my verdict
What was my view about This is Me? As the proud father of two girls with albinism and as someone who has been closely involved with the Albinism Fellowship for almost a decade (and my wife is a Trustee for the charity) it can be tricky at times to ‘see the wood from the trees’.
But what reminded me that what we and other albinism organisations do really does make a difference was the keynote speech.
Mike McGowan, head of the American albinism charity NOAH said that albinism was a factor that united people – never mind their ethnic background, country of origin, age or personal circumstances. Those with it all face the same challenges and can still achieve remarkable things in their lives.
Well said Mike; listening to your humble address about your 25 years working with the albinism community brought a lump to my throat and a tear to my eye. Which says it all.
For more information
If you would like to find out more about our conference sessions, take a look at our website https://www.albinism.org.uk/conference-2019/ Our next conference will be at the same venue in Derbyshire again in autumn 2021. If you would like more information about albinism itself, take a look at this link on our website https://www.albinism.org.uk/about-albinism/
Rare Revolution Editor