After the morning riding tandems and playing VI cricket, the Aniridia Network UK Meeting 2016 moved to nearby Holy Trinity church.
Sitting down to for lunch gave us all more opportunities to chat, meet up with and make new friends.
“Meeting and talking to others with aniridia made me feel really positive about my son’s future.” Jenna
“As a mother of a young child with aniridia, I was happy to meet other families. I was worried about the future but seeing how people cope at first hand made me feel confident about how she will get on with her life.” Anastasia
“It was good to meet some new people. I sat with a few first-timers to the conference and it was interesting to hear their stories.” Sarah
Trustee James welcomed everyone, gave some orientation tips and then introduced the expert presenters.
Dr Jane Leitch spoke about the less often discussed effects of abnormalities in the PAX6 gene that usually causes aniridia.
“The presentation by the doctor was great as it was easy to understand and I learnt a couple of new things that I hadn’t previously been aware of.” Parent/carer
Debbie, the ANUK Daily Living Advsier gave an interesting insightd into the work of a mobility professional as well as a person with aniridia.
“Interesting talk on managing daily living activities with severe sight loss.” Parent/carer
“Just learned a lot what daily life with aniridia means, so helpfull!!” Lisa
We were then treated to the next instalment of Harry Westwood’s story, since he talked at the ANUK Conference 2014, he has started university.
Harry highlighted the everyday challenges he faced in living independently from catering for himself to navigating a strange campus.
“[I enjoyed] the opportunity to get real life information which you do not always get from doctors.” Carolyn
After the AGM, we were encouraged to write a pledge on a positit of something, large or small, that we could do to help keep ANUK running in the future. Everything the charity does is done by volunteers, from the fundraising so that events like the conference can be held to the everyday administration of running a charity.
During the break delegates could chat and browse the exhibition in the atrium. A share of the profits from the commercial stalls was donated to ANUK.
For the first time at our events, our Medical Adviser provided an opportunity for informal consultations for patients and family members.
“Glad my partner was able to speak to a surgeon about corneal surgery which was worth its weight in gold; as he has little opportunity to talk frankly in a non pressurised environment with an expert in aniridia.” Clare
The second half offered a choice of talks. In one room was Daniel from Nystagmus Network and Jenny representing Blind Children UK. Meanwhile in the main hall was Emily who has aniridia, talking about her: life, campaigning and politics.
“I particularly liked hearing Emily’s story and how, whatever your background or variation of aniridia, it is always possible to pursue the career that you are passionate about.” Sarah
This was followed by Maria from Living Paintings demonstrating their service
“It was an interesting exercise in using your tactile skills, which as a non-Braille reader, mine could probably be better.” Sarah
James bought the meeting to a close. We showed our appreciation for the all the coaches, riders, chefs, speakers, exhibitors and other volunteers for all their hard work to stage the event that made it such a success.
There had been a fundraising quiz. The winners of collected their prizes.
Several delegates adjourned to the local pub to continue swapping experiences.
The event was best summed up by the following quotes:
We’ve had a great day today, listening to some excellent and informative speakers. Thank you.” Clare
“It was my first time attending, I found it very informative and excellent having the opportunity to talk to others with a similar eye condition. There were many volunteers present which helped to make the day run very smoothly. Everybody was so friendly and it was a real pleasure to attend.” Eleanor
“I gained more understanding and knowledge on aniridia and things that relate to me. It was good meeting others, I enjoyed the experience.” John
“Totally recommend this event for those involved with aniridia. It was an interesting day and left the best impressions, especially when everything is planned and delivered by volunteers. Thank you and keep doing it!” Anastasia
“I enjoyed the talks and chatting to others and it was great to feel included and in a group rather than feeling alone. My son was buzzing on the way home as he had never met anyone with aniridia and he now wants to help raise awareness and funds. He really enjoyed speaking to new parents of a 6 month old boy as he felt he could reassure them that his life had been great and aniridia was a part of him but it hadn’t defined him.
I purposefully spoke to them as I remember being that scared mum at a VI event 19 years ago and felt reassured when I spoke to other mums ahead of me on the journey.” Philippa
And this one says it all:
“I felt on the day of the conference everyone went above and beyond to ensure those who attended gained something out of the day. Personally I gained a huge amount about resources and useful information about aniridia. As a charitable organisation, it is a project very dear to my heart. I want to become a volunteer eventually. “Join Aniridia Network Shout it with pride!” Just need to spread the word using social media, TV, radio, charitable organisations, teaching hospitals etc.” Carole
Back in the church hall there was a big 60th birthday party for Mary, the event co-organiser. There were a variety of fundraising activities in aid of ANUK and Guide Dogs Association. The grand total raised for ANUK was £380!
A massive thank you goes to everyone who attended and contributed to the wonderful day for everyone.
Find out what happens after our big events and view the slideshow of more photos from the day:
Words and pictures by:
Sarah, Lyn, James, Katja, Moragn, Clara