Zoom celebration for International Albinism Awareness Day on 13 June 2021
Guest post from Roselle Potts, Chair of the Albinism Fellowship
To mark International Albinism Awareness Day* on 13 June the Albinism Fellowship is running a mini conference on Zoom.
The event will kick off at 2pm and after a brief introduction session there will be 3 choices of session to join in with:
1. A session for parents whose children have been newly diagnosed with Albinism.
2. A ‘cook along’ session for children and teens.
3. A discussion session for adults with Albinism.
Roselle Potts, Chair of the Albinism Fellowship, said: “ During the past difficult year of Covid-19 and lockdowns we have used technology to enable people with Albinism and their families to continue to connect, share and celebrate. We hope that lots of our community will join in on 13 June”
About International Albinism Awareness Day*. International Albinism Awareness Day is marked every year on 13 June to celebrate the human rights of people with Albinism around the world. It is marked with specific events in various countries, social media activity and campaigns. The United Nations’ General Assembly proclaimed 13 June as this specific day with a resolution it adopted in 2014.
While the birth of a new baby is an occasion to celebrate, parents of children born with albinism often find that support for children with this rare genetic condition is hard to access.
To mark International Albinism Awareness Day* on June 13th, the Albinism Fellowship has stepped in with a new Baby Box scheme. This is available for all families who have a child with albinism who is under one year old and who become paid up members of the charity for the sum of £20 per year. The charity has obtained grant funding for this project and the items in the baby box
From that date, mums and dads will receive an Albinism Fellowship baby box as part of their membership. This contains items to help parents meet the specific needs of their young child; sunglasses, a factor 50 SPF sun protection hat, sun cream samples, a high contrast book and sensory toy as well as the Fellowship’s Understanding Albinism booklet.
Roselle Potts, Chair of the Albinism Fellowship, said: “The arrival of a new baby in the family is a joyful occasion, but when parents find their child has albinism, this can prompt many questions and even concerns. Children with albinism are visually impaired and very sensitive to the sun meaning they need extra care. “
“As the only charity in the UK and Republic of Ireland for people with albinism, we have around 40 years’ experience in helping mums and dads of young children with albinism.”
She added: “The baby box is an exciting new initiative which we are sure will be welcomed by new parents of children with albinism. When we chose which items to include in our ‘baby box’ we looked at the most common queries raised by new parents.
“They often ask us questions about how to protect children from the sun and how to best stimulate their babies’ sight, as children with albinism live with high degrees of visual impairment.”
Rachel Whyte, who received the first baby box for her son ( pictured with his book and glasses) said
“The baby box from the Albinism Fellowship was a gratefully received addition to the support they have already given my family. Having something in my hands meant I could use the helpful advice without having to worry about sourcing the right items. It gave me ideas of the right creams and hats to use and my son loved the easy grip brightly coloured balls. Thank you so much, we love it!”
Notes to editors
For more information about the Albinism Fellowship Baby Box Scheme, or for interview and photo requests, please contact Roselle Potts at the Albinism Fellowship email: [email protected]
About International Albinism Awareness Day*. International Albinism Awareness Day is marked every year on June 13th to celebrate the human rights of people with albinism around the world. It is marked with specific events in various countries, social media activity and campaigns. The United Nations’ General Assembly proclaimed June 13th as this specific day with a resolution it adopted in 2014.
A guest post from Roselle Potts, Chair of the Albinism Fellowship on International Albinism Awareness Day 2019.
‘The prejudice and struggles facing people with albinism are sadly as present as ever in 2019…
‘International Albinism Awareness Day is with us again on 13 June and it’s a chance to reflect on the progress that has been made in recent years.
‘As a rare genetic condition that affects people’s eyesight and gives them distinctive pale hair and skin, albinism brings its own specific challenges.
‘Since many people with albinism have nystagmus as one of their visual impairments, I’m sure members of the Nystagmus Network – a charity we work closely with – can fully understand how challenging things can be.
‘Society has rightly moved forward in terms of recognising the rights of people with disabilities in the last few years and there has been greater effort made to acknowledge the special problems experienced by people with albinism from ethnic minority backgrounds, including by the Albinism Fellowship. But more still needs to be done.
‘It is true that our members in the UK and Republic of Ireland don’t suffer the extreme prejudice and live with the risk to their lives that people with albinism in parts of Africa must face, but life can still be a daily struggle.
‘For parents with a newly diagnosed child with albinism it can be difficult to access the correct support from the NHS.
‘Since albinism is such a rare condition – we estimate just 3,000 people live with it in the UK and Ireland – it may not even be diagnosed correctly.
‘If parents do get the right diagnosis, they may still hear urban myths such as “you’ll never be able to take your child on holiday in the sunshine” (simply untrue, but parents need to travel prepared with shades, Factor 50 sun cream and a wide brimmed hat) or “they will never be good at sport.”
‘This is where the Albinism Fellowship comes in. As a positive and sociable volunteer run charity we are the only national charity in the UK and Ireland that exists to support people with albinism and their families. We are planning to launch our new website on 13 June 2019. Here, people can find out how to join the Albinism Fellowship and obtain a useful booklet called ‘Understanding Albinism’.
‘When the child with albinism starts at their local primary school, there may be a lack of availability of magnifiers to help them see textbooks, or no teaching assistants available.
‘While we hear encouraging stories of fantastic teachers and schools supporting kids with albinism, we also still hear disturbing stories of teachers simply not understanding albinism, or being willing to provide extra support.
‘Since this is 2019, this factor is simply not acceptable in a developed country like the UK – imagine the sheer distress the child and his or her parents experience as a result. At our Adult and Family Weekend Conference from 18 to 20 October 2019, we will have expert speakers on education rights and mobility as well as loads of fun activities for children and teens with albinism and their siblings.
‘Adults with albinism experience their own battles throughout their own lives, too. This can be misunderstanding of their condition, prejudice or the lack of access to the same career opportunities that their fully sighted peers would enjoy.
‘We will be hosting bespoke sessions again for adults with albinism including discussion groups during our conference this October. This will be a brilliant weekend with the theme “This is Me!” to encourage all people with albinism to be confident in who they are.
‘The Albinism Fellowship will continue to help people with albinism “still stand strong” – in keeping with the theme of this year’s International Albinism Awareness Day.
On International Albinism Awareness Day, Thursday 13 June 2019, please use social media to show your support to people with albinism around the world. Use the hashtags #IAAD and #IAAD2019 and tag the Albinism Fellowship (@Albinism) and we can share your messages across our networks
In conjunction with International Albinism Awareness Day, the Albinism Fellowship’s summer barbecue and get-together will be in Carshalton, Surrey on Saturday, 15 June, from 11.30am-3pm. The event gives people with albinism and their families the chance to socialise, catch-up with news from the Albinism Fellowship and enjoy some tasty food. This year, the summer event is at a new venue, the Church of the Good Shepherd, a short walk from Carshalton Beeches railway station. People attending should bring their own food for the barbecue. Attendance is free, but please confirm first by email with [email protected].