In this issue:●Amnesty International Collaboration●2016 Dublin Conference●Brighton Event and the Christmas Party●Easyfundraising●Fundraising by Our Members●Career Profile

Albinism Life Issue Number 30 Spring 2017

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After a long winter, finally Albinism LifeSpring issue is here. We have a mix of excitingarticles and news to share with you.

The Fellowship’s final two events of 2016were the Dublin Conference in November andthe Christmas Party in December, so if you were there lookout for a photo of yourself or your children in this edition!

Recently, the fellowship trustees decided to support Am-nesty International’s campaign, which is running a campaign toshow solidarity and support for people with Albinism in Mala-wi. Our chair Roselle Potts reports on that initiative. Thephotos taken by a professional photographer are very inspira-tional.

During 2017, our biggest event will be the bi-annual FamilyConference to be held in Derbyshire between 20-22 October.Our trustees have already started to plan the conference.Please do not miss this big event: mark it on your calendars.

In this issue, you will also find the invaluable Career sec-tion, which we started in the last issue. I believe it has beenvery inspiring for our young members to find about differentcareer options and what other young people with albinism aredoing in their day to day roles.

Looking forward to seeing you at the October 2017 Con-ference. and please do remember to send me your articles andnews for future magazines.

Pinar Erder, magazine@albinism.org.uk

Editorial

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Many of us in the Albinism community in the UK & Ireland areaware that the situation for many people with Albinism inAfrica is extremely difficult and sometimes dangerous.

During November and December 2016 AmnestyInternational organised a campaign to show solidarity andsupport for people with Albinism in Malawi and we decided toget involved. Members of Albinism Fellowship took part in aphoto shoot with celebrity Reggie Yates and the photos wereused in a fabulous exhibition in central London to raiseawareness.

Albinism Fellowship members also wrote letters of supportfor people with Albinism in Malawi along with many AmnestyInternational supporters world wide.

Amnesty staff tell me that past campaigns of mass letterwriting have given a great deal of comfort and hope to peoplein difficult situations. They also hope that letters of supportwill strengthen their campaign to try and persuade theGovernment of Malawi to improve the prospects for theircitizens with Albinism.

Amnesty International Collaboration

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Amnesty International Collaboration

Deirdre

Christian

Yemi

Zain, Deirdre, Yemi, Christian

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A big thank you to all members that took the time to help withthis important cause. Here are some quotes from our friendsin Malawi:

I am a bit overwhelmed and out of words and trying not tocry. Thank you so much for the amazing work you have donein profiling the cause of People With Albinism.....

I am really happy that you made contact with the AlbinismFellowship in the UK. The pictures by Reggie Yates arereally powerful.

Vongai V. ChikwandaCampaigner Southern Africa TeamAmnesty InternationalSouthern Africa Regional Office

They are absolutely BEAUTIFUL!!!The stories are wonderful. Can we use them? You guys arejust marvellous. I too am completely lost for words. Youhave no idea what the impact of your work is.. absolutelyno idea! We are so grateful.

Muleya MwananyandaDeputy Regional Director-CampaignsAmnesty InternationalSouthern Africa Regional Office

Amnesty International Collaboration

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On November 12th 2016 Albinism Fellowship held a dayconference at Child Vision in Dublin. 42 adults and 24 childrenattended on the day. While the younger children enjoyedactivities in the crèche provided by Child Vision, the otherattendees enjoyed a series of talks on topics such as emotionalwell being, technology, sensory processing and mobility.

The Albinism Fellowship would like to thank Anne MarieCostelloe and her team at Child Vision for hosting the event aswell as Geraldine Neill and Audrey Derby for their veryinformative talks. Thanks also to speakers Robin Spinks, RNIBand John Delaney, Fighting Blindness and our exhibitors fromChild Vision and Vision Sports Ireland. We are very grateful toTrustee Mark Sanderson and the Ireland Committee fororganising such a successful event.

2016 Albinism Conference in Dublin

Young members at the Dublin Conference

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Over lunchtime therewas an opportunity to visitthe exhibition with standsfrom Child Vision, Albinismfellowship and Vision SportsIreland. In the afternoonteens had the opportunity toattend a tour at the nearbyGaelic Athletic Association’snational stadium, Croke Park.Albinism Fellowship heldtheir annual general meetingat the conference, informingmembers in Ireland abouttheir activities over the pastyear.

We received very positive feedback from participants at theevent:

“Good information on how to cope with Albinism throughoutlife.”

“I think the new committee did a fantastic job. Well done.”

“It was great that the Croke Park event was arranged for theolder kids.”

“Venue was great.”

2016 Albinism Fellowship Dublin Conference

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Materials from Albinism Fellowship stand

2016 Albinism Fellowship Dublin Conference

Robin Spinks, fromRNIB, talking about thetechnology for thepeople with sight loss

Children enjoyingthe puppet show

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I am the mum of 3 year old, who has albinism. I first heardabout the Albinism Fellowship from searching on the Internetfor information about albinism as I found the informationprovided by doctors to be lacking. I became a member of theAlbinism Fellowship. I really wanted to meet other familiesaffected by albinism in my area so I started a Facebook group‘Albinism support for Sussex’ and asked the FellowshipTrustees if I could run an event in my area.

I was given lots of encouragement so I approached a localhotel and arranged to book a luxury suite for free as long asI ordered refreshments for about £100. To keep it simple Iprovided just cake and some sweeties for the kids. For me thiswas perfect as I wanted families attending to haverefreshments without worrying about costs.

Brighton Event

Emma and Jake

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Brighton EventI am really lucky to have some great friends and family who

rallied round to provide entertainment including caricatures,magic tricks and a visit from Spiderman. The AlbinismFellowship covered all the expenses so I wasn’t out of pocket.The Fellowship also publicised the event on their website ,through emails to members and via Facebook. On the day wehad eight families along and everyone had a great day. One mumwho came along was inspired to organise her own event too,which was great.

I found from organising thisevent that my husband and Ihave made some lifelongfriends and my son and stepdaughter will grow up withfriends with albinism whichis so important.

We have a really lovelygroup all close to eachother and a Facebook pageall ready and waiting fornew members. Our website is “ Albinism Supportfor Essex”.

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Lorna Stacy organised another fabulous festive gatheringfor Albinism Fellowship families on Saturday 17 December inReading. The children met with friends old and new whiledoing craft activities. Fun entertainment followed from aprofessional children’s entertainer who even got the adultsinvolved in the okeycokey!While the children settled down to party tea the adults

bonded over hot drinks and mince pies. A very familiar lookingSanta brought lovely gifts for all the children to round off awonderful afternoon.

Many thanks to Lorna for organising and to Mark, Martinand Karen for all their hard work helping. IF YOU WOULDLIKE TO ORGANISE AN ALBINISM FELLOWSHIP XMASPARTY IN YOUR AREA IN 2017 GET IN TOUCHrosellepotts@albinism.org.uk

2016 Albinism Fellowship Christmas Party

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Limbo challenge!

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Fantastic dancers

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Did you know that whenever you buy anything online - fromyour weekly shop to your annual holiday - you could becollecting free donations for Albinism Fellowship ?

We have 35 members already fundraising for us and theyhave raised £518 for us just by doing their shopping online!There are over 3,000 shops and sites on board ready tomake a donation, including Amazon, John Lewis, Aviva, eBayand Sainsbury's – it doesn't cost you a penny extra!

It's as easy as 1, 2, 3...1. Head tohttps://www.easyfundraising.org.uk/causes/albinismfellowshipukireland/ and join for free.

2. Every time you shop online, go to easyfundraising firstto find the site you want and start shopping. Evenbetter download the reminder toolbar so you never missout on a fundraising opportunity.

3. After you’ve checked out, that retailer will make adonation to your good cause for no extra costwhatsoever!

There are no catches or hidden charges and we will bereally grateful for your donations.

Easyfundraising

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Charity events in the office are often a great way to raisefunds for Albinism Fellowship.

On Friday 16th December, AF Trustee Daniel Hill and hiscolleagues at CME Group held a festive fundraising day, whereemployees could enter a Christmas jumper competition, enjoya cooked breakfast, or purchase homemade cakes, all in returnfor a small donation to AF.

Over £390 was raised during the course of the day, not badfor stuffing your face while looking silly!

Many companies hold events such as dress down days, quiznights and bake sales for charity, so why not enquire whetheryour company can choose AF as one of the recipients? We'realways happy to help with providing information, logos andleaflets, just drop us an e-mail at info@albinism.org.uk.

Festive Fundraising

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Fundraising Legwork for Lucia

You may recall an article in issue 28(Winter 15/16) where I told youabout my ‘Legwork for Lucia’challenge, to raise money for theAlbinism Fellowship. The idea was torun over 100 miles of races, of alldifferent types and lengths, in thesummer of 2016, starting with thefamously fiendish Hastings halfmarathon and ending with thebeautiful Barns Green half marathon.

Well, as it happened, things kickedoff early – halfway through mytraining for Hastings I found myselfa last minute place on the Brightonhalf marathon. I found out on theWednesday I was running it on theSunday, so there was no time for anypreparation! It all went surprisinglywell though and I got off to a flyingstart with a personal best time. I ranthe Hastings half shortly after, butthen disaster struck and I fracturedmy shin. I could barely walk, let alonerun! I had to cancel one race, and pullout halfway through another, and thewhole project looked in jeopardy asthe very busy period of back to backraces was looming, which I couldn’tafford to miss.

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Fundraising

But with a sympathetic consultant (‘I guess it’s no good metelling you not to run, right?’), a good deal of patience, andwith absolutely no training, a month later I was back in thegame running the East Grinstead cross country 10 miler (it wasreally slow, but I ran it all!). With grit and determination, Iwent on to run all my other races as planned (albeit someslower than I’ve ever run anything before) and it was aninteresting lesson in running for something bigger and moreimportant; racing was no longer just about a fast time on aresults page, it’s running for a cause.

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I had to cram some extra races in at the end to make up forthe races I missed, and I had to continue to train though myholidays abroad (no laying on a beach for me!), and I also hadsome interesting obstacles along the way (running a 10k racein a very large and cumbersome white rabbit outfit, in 30c+temperatures, and nearly missing another race because ofbeing stuck behind, of all things, a travelling circus on theway). There were some very low lows, and some great highs,and I even got to meet Dame Kelly Holmes in the process. Igot there in the end, and all in all I ran a total of 116.5 miles(121.5 if you count the 5 miles of the one I had to pull out ofhalfway through), and raised £2242.79 plus £421 gift aid,making a total of £2663.79.

I’ve been totally amazed by everyone’s generosity and thesupport I received, and the project has been so much more(in so many ways) than I ever envisaged it could be. My runningclub even donated the proceeds from the collection at theirChristmas fun run to the cause, putting an extra £89 plus£16.25 gift aid in the pot, and making the final, final total atthe end of 2016 £2769.04.

Albinism Fellowship’s chair, Roselle informed me that thereare a several projects now that they can put the money to andbring to life. So a successful year all round! Many, manythanks to everyone involved.

Fundraising

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What inspired you to choose your career?

From a very young age I knew I wanted to work with children.In secondary school I did a work placement in a crèche and Ibecame very interested in how young children learn anddevelop. This inspired me to apply to University College Corkto study Early Childhood Studies. As part of this degree Ilearned about disability politics and the history and currentsupport for children with special educational needs. This verymuch resonated with my experiences and I decided that Iwanted to support children with sight loss and their familiesin the future to let them know what services and support wereavailable to them. I completed a research masters in preschooleducation for children with a visual impairment in the Republicof Ireland in 2003. It was the first study of its kind to takeplace in Ireland and I greatly appreciated the support I gotfrom all the sight loss services there. After a year working ina nursery I applied for a Family Support Officer role at RNIBNorthern Ireland. I was successful and was a Family SupportOfficer for two years. For the past nine years I have been themanaging the Children and Families Service.

Career Profile

Name: Rosaleen Dempsey, age 37Profession: Children & Families ServiceManager at RNIB, Northern IrelandEducation: BA Early Childhood Studies,M.Phil.Email: rosaleen.dempsey@albinism.org.uk

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Career Profile

What are the challenges of your career for a visuallyimpaired person and how do you overcome these challenges?

I think that access to travel and public transport is a key issuefor many of us with sight loss. Access to information can bechallenging and also many ICT systems are not designed to bevery accessible with magnification programmes. When I began,my role I applied for support from Access To Work. I have asupport worker/driver who assists me with inaccessibleadministrative tasks and drives me to places when publictransport is not available or feasible. However, I am a veryindependent person and I try to do as much as I can formyself. There are often ways around the challenges I face.

What would you recommend to a young visually impairedperson about your profession?

I think working for a charity is very fulfilling. I am very luckythat my role allowed me to set up a service to help familiesof children with sight loss across Northern Ireland. Mycolleagues are passionate and hard-working people who wantto make a real difference for people with sight loss. Thereare great opportunities for training. The family activities andyoung people’s residentials my team organise are great fun.

Would you like to be contacted by Albinism Fellowshipmembers for advice? Yes

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Joan Sanderson1946 – 2016

Joan was an ardent supporter of AlbinismFellowship over 25 years since her son Mark firstjoined the board of trustees as Secretary.

Some of you will have had the pleasure of meetingJoan at an Albinism Fellowship conference or familyday, or may have spoken to her on the phone as sheregularly used to answer calls to the help line in thepast.

Joan was always enthusiastic about and supportive of the Fellowship’swork, whether she was replying to correspondence, supporting Mark inthe many and varied roles and responsibilities he’s had with AF over theyears, helping out at a local family day, fundraising at home (including byselling her home baked cakes), or attending and helping out in manydifferent ways at the Fellowships biannual family conferences, whichJoan heavily supported Mark in delivering since their inception in 1997.

Joan’s love of life and people shone through in many other ways tooespecially when she spent time with her family, friends, pet dog Snowy,and in the huge amounts of unstinting practical help she gave toneighbours which meant she was a very busy well-liked lady!

Very sadly Joan was taken from us too early, suddenly and unexpectedlyafter collapsing at home on 6th August 2016. She had just turned 70 inMay. Joan is sorely missed by her family and friends and we feel sureby the albinism community too who will be ever grateful for all her hardwork on their behalf and will miss her positive presence at events andthe resolute commitment and support she gave to the Fellowship.

Mark SandersonFebruary 2017

Tribute

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● Connect Albinism Information Day, Derry/Londonderry NIDate: Saturday 29th April 2017Venue: RNIB NI, First Floor Embassy Building3 Strand Road, L'Derry BT48 7BH

Booking required for this event - Please contact;Rosaleen Dempsey, Contact Person (Northern Ireland)028 9033 4116 (Direct Line) rosaleen.dempsey@rnib.org.uk

● Connect Albinism Information Day, Belfast Northern IrelandDate: Sat 20th May 2017Venue: RNIB NI Victoria House,15-17 Gloucester Street, Belfast BT1 4LS

Our Connect Albinism Information Day in Belfast returns. Furtherdetails to follow. Booking required for this event - Please contact;Rosaleen Dempsey, Contact Person (Northern Ireland)028 9033 4116 (Direct Line) rosaleen.dempsey@rnib.org.uk

●Scotland Albinism EventDate: Sunday 28th May 2017, 2-5pm

Venue: Kinning Park Complex43 Cornwall Street, Glasgow, G41 1BA

For families and adults with albinism. Soft play for little ones, partygames and craft activities for older children. Light refreshmentsprovided. Please email roselle.potts@albinism.org.uk if you would liketo attend, also giving the name and age of any children you are bringingwith you. Please note, Albinism Fellowship may be able to provideassistance with travel costs for those who could not otherwise affordto attend the event. Please e-mail Roselle to find out more.

Fellowship Events

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Fellowship Events

● Irish Summer Get-Together

Date: Saturday 17th June 2017 1pm-4pmVenue: The National League of the Blind21 Hill Street, Dublin

● London BBQDate: Saturday 15th JulyVenue: Scout ParkGordon Road Bounds Green London N11 2PBIt is 5 minutes from Bounds Green tube station. This gives easy accessto all of Central London via the Piccadilly Line. The Park is also just offthe North Circular A406 so it’s easy to get to from the M1, M11 andM25. The BBq will be from 11.30-4.30. As usual please bring your ownmeat/vegetarian alternative to put on the BBQ. We provide separateBBQs for vegetarian and for Halal meat and also provide all buns, salad,relishes etc. We also ask that guests bring puddings to share. We willbe organising some entertainments for the children. Please emailroselle.potts@albinism.org.uk to let us know if you plan to come along.

●Albinism FellowshipFamily Conference

Date: Friday 20th October-Sunday 22nd October 2017Venue: Hayes Conference Centre, Swanwick, Derbyshire.

We are pleased to announce that booking has opened for AlbinismFellowship’s 2017 Adult & Family Weekend Conference “Look on theBright Side!”.

Due to its popularity the event is being held again at The HayesConference Centre, Swanwick, Derbyshire. The main family weekend

conference runs between the early afternoons of Friday 20th- Sunday

22nd October.

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This year’s packed programme is in development and speakers alreadyconfirmed include:

● Dr Oscar Duke, Medical Doctor, film maker with albinism● Rick Guidotti, Director, Positive Exposure● Vaijayanti Drumm, Mind Trainer in mental health● Mr Jay Self, Consultant Ophthalmologist● Dr Patricia Lund, Geneticist

There will be talks on all kinds of topics related to albinism, activitiesfor kids, teens and adults, social gatherings, exhibitors, a crèche ifneeded, great friendly company in a welcoming, positive, sociable andsupportive environment. New for 2017, is an optional pre-conference

Adult’s with Albinism only activity day on Thursday 19th-Friday 20th

October. For further details and to book, go to:https://lookonthebrightside.eventbrite.com

Albinism FellowshipPO Box 2535 ILFORDIG1 8NY, England01282771900Email: support@albinism.org.uk www.albinism.org.uk

Fellowship Events