★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ Spring 2015 No. 78 SHINE BRIGHT AND BE UNIQUE ★ ★ Help raise awareness for ★ ★ ★ chromosome disorders ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ CHROMOSOME DISORDER AWARENESS 2015 7th –13th June 2015 ★ ★ ★ ★ ★★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ For more information and ideas, ★ see pages 3 –5 ★ Inside this issue Group News | Fundraising | Members’ Letters | Awareness Week 7th –13th June 2015 | Unique’s Show Garden at Hampton Court Palace | The Compassettes Sophie, Unique’s Chair of Trustees Dear Members, Legacies Have you ever wondered why membership of Unique is free, why we don’t charge to join? I never gave it a thought until I became a trustee of Unique. Since Max’s birth I’ve joined lots of organisations and support groups that have helped in different ways and unlike Unique almost every one of them charges an annual fee. I discovered that at Unique it has always been a basic principle that we are free to join – both for families and for professionals. Why is membership free? We don’t want anyone to miss out on our helpline, on making connections with other families and on our magazine for financial reasons. We don’t charge for downloading the chromosome guides either as we want families and professionals to get immediate unrestricted access to high quality combination of grants from charitable foundations and donations from information. But another reason for not charging is that one of the most members and more and more from the amazing fundraising activities so important and unique (!) things that Unique does is to collect in its many of you do for Unique: those marathons and 10k runs, those cake database life-time information about all our children and their medical sales and dress-down days, and so much more. There is one other thing and developmental challenges. Our database holds the most extensive that we could do to help guarantee Unique’s long-term future: by making information about rare chromosome disorders in the world and we want a legacy to Unique . When you come to draft or revise your will, a legacy to keep adding to it and we want the knowledge we build up to be shared is wonderful way to make a long-lasting contribution to Unique, without as widely as possible. We don’t charge because we want all of you to stay needing pay for it now. A small legacy, whether a specific sum or a Unique members forever, long after the initial shock of diagnosis has percentage of your estate, would make a huge difference many years passed and when you might feel you don’t need Unique as much. We ask down the road. A legacy could be used to continue Unique’s general work you to update us about how your Unique child or adult is doing so that we of raising awareness and understanding life with chromosome disorders can continue to gather more information as our children age. At birth I and supporting families, or a legacy could fund a specific project close to wanted to know whether Max would walk or talk. Now I want to know your heart. Please do let us know if you would like more information on how teenagers with his chromosome disorder are affected by puberty how to leave a legacy to Unique and how you could make a difference. and what they do after school. Later I will want to know about how Please do contact me on [email protected] or Craig on middle- and old-age will affect him. We all need each other to stay in [email protected] or +44 (0)1883 723306 to talk about how you touch with Unique so that we can learn from each other’s children. If we would like to help. charged we fear that members wouldn’t stay in contact after the first few Thanks, years. Not charging a membership fee is tough! It means no regular income, no increase in income to match our huge membership growth. In the last 10 years our membership has grown from around 2,000 to more than 12,300 and around 150 new families join us every month at the moment. Our staff work fantastically hard to provide the same quality of service to the 12,300+ as they did to the 2,000. We do it through a Sophie, mother of Max, dup 9p Beverly, Unique’s CEO Dear Friends Following on from Sophie’s plea above for help with fundraising and understanding of what a rare chromosome disorder is and what it means legacies, I want to stress how important it is that we also raise to families like ours, caring for our very special children. So please start awareness of rare chromosome disorders among professionals, family planning now what you are going to do in awareness week. We can help and friends, work colleagues and the general public. In this issue you will with information and instructions and will be sending out and posting on find lots of information on our forthcoming Chromosome Disorder our website and Facebook lots of information over the coming weeks. Awareness Week from Sunday 7th to Saturday 13th June, as well as on However, if, for example, you want to give a presentation at school or our amazing show garden at the Hampton Court Palace Flower Show work or have an awareness-raising event at your local supermarket, you starting at the end of June. As I commented when I made a really need to contact these organisations now because they get booked donation to kick off our fundraising appeal to help up quickly. We are also planning a press campaign and will need case make the Show Garden a reality, I can remember studies for different geographical areas, so please let Caroline only too well the completely blank looks on most ([email protected]) know if you would like to help with this. Let’s people’s faces when I told them about my really shine the spotlight on rare chromosome disorders and enlighten daughter Jenny’s rare chromosome disorder. new audiences about rare chromosome disorders. Most had not a clue what I was talking about Thank you and kindest regards and it was so isolating for us as a family. Things have improved to some extent but there is still a huge way to go to make people instantly recognise the name Unique and to have a good Beverly www.rarechromo.org 2 GROUP NEWS CHROMOSOME DISORDER AWARENESS 2015 7th –13th June 2015 ★ ★ ★ ★ ★★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ ★ If you have been touched by Unique, we would really love your ★ ★ support to help us to raise awareness and reach more people who, like you, have faced the diagnosis of a rare chromosome ★ disorder. ★ There are so many ways you can help. Our aim is that awareness week is fun and inspiring and celebrates the unique children and adults in our lives. We want to evoke togetherness GET INVOLVED 7th –13th June and help spread the word so no family faces diagnosis alone. SUNDAY ‘SELFIE SUNDAY’ Share your ‘chromo cutie selfie’s’ on your Facebook page creating awareness and we’ll celebrate our togetherness by building a wall of photos on the Unique Facebook page. MONDAY PRESS and SOCIAL MEDIA Inform others about chromosome disorders on Facebook, Twitter, Instagram and talk to your local press. TUESDAY SPREAD THE WORD Tell 3 people you wouldn’t normally tell, as well as professionals and your local political representatives about chromosome disorders. WEDNESDAY PRESENTATIONS Give a presentation at your child’s nursery or school and at your place of work. THURSDAY Q&A Our team will be answering any questions you or anyone else might have. FRIDAY BIG BLUE BAKE SALE and Download our Big Blue Bake Kit from the website and hold a DRESS DOWN DAY truly ‘unique’ cake sale and dress up at nursery/school/work in Unique’s colours, yellow and blue. SATURDAY EVENTS and COLLECTIONS Hold a fundraising event such as a sponsored walk, garden party, fun day or organise a bucket shake at your local supermarket, or you could even hold a dinner party. Look out for more details, over the coming weeks, with ideas and instructions to help you get involved. There will be a new, dedicated awareness week page on our website as well as regular emails and posts on our Facebook and Twitter feeds, We will be sending out ‘daily facts’ every day during awareness week, so please help us reach a wider audience and shine the spotlight on chromosome disorders by sharing these facts with others. For more fundraising/awareness raising ideas, please visit our website www.rarechromo.org or contact [email protected] . www.rarechromo.org 3 GROUP NEWS Unique Garden at Hampton Court Palace Flower Show You may have heard about our exciting plans for a Unique Garden at the Hampton Court Palace Flower show this summer. It’s a brilliant opportunity for us to raise awareness about rare chromosome disorders. chromosome disorder. We felt utterly alone. It is so important that we raise awareness not only among professionals involved in our children’s care but among members of the general public so our families do not feel isolated. The Unique show garden will help us reach out to a new audience, not only those visiting our garden but potentially thousands of people watching on the TV and reading the press. So I am kicking off the appeal by donating £200 in my darling Jenny's memory. If you are able, please do join me.” We suggest a minimum donation of £10 (GB pounds) but any donation to sponsor a plant, however large or small, will help us reach our goal.