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A healthy heart is important to everyone, and in Turner Syndrome there are additional concerns with regards to the importance of a healthy heart, at conference last year with help of Prof Gerry Conway, we launched our new initiative to promote health and wellbeing ”TSSS Walk in the Park" and were delighted by the response from medics and members alike.

What is Walk in the Park?

During June, your challenge is to walk or run 10,000 steps per day from the 1st to the 24th June. On Saturday 24th June we are asking you to join up with friends and family, or your local TSSS friendship groups, to raise awareness take some steps together, and also celebrate the UK Turner Syndrome Awareness Day and your achievements.

There is no age limitation, there are multiple ways, walking the dog, walking in the park, walking on the beach, line dancing, stepathons, you name it there are hundreds of ways. Have some fun with it.

Primarily Walk in the Park is about health and well being, there is also though the opportunity to raise awareness of Turner Syndrome and raise vital funds. With this in mind sponsor forms are available from the TSSS office, or can be download from the website. A Just Giving Page has been set up so that any sponsorship money or donations can easily be paid in here - or use the Sponsor me button on the right of this page.

We also have a Facebook page set up too, to support each other, please search TSSS Walk in the park TSSS (UK) Official Walk in the Park challenge 2017.

Many of our members have already started to build up their steps, using either a pedometer on their phone, or having purchased a watch type advice (Fitbit or similar). It is amazing how few steps you can take a day if you work in an office environment or drive everywhere. The recommended level of exercise is at least 10,000 steps a day.

I am delighted that you are stepping out with us on this journey, we are keen to make this a great success and with your help we can not only make this work, but can build on the initial success.

Anyone can join in, so get yours friends and family involved, Children are also signing up too, they probably do more steps than us let’s be honest.

Have fun, stay safe, and let us know how you are getting on.

Jane Raper xx
Chair of Fundraising & Donations Committee

Our 3 Tenners appeal was initially launched in 2009 in our 10th Anniversary year, and the aim then was to raise £10,000 to raise awareness and to find the estimated 10,000 girls and women in the UK who remain undiagnosed. The response from members, and their friends and family was overwhelming, and we raised in the region of £30,000 that year.

Since then we have welcomed many new members into the society, many more beautiful girls and women who due to their diagnosis are now receiving the medical management they need, and also have support available, not only to them but to their friends and family too.

Recent tragic events, have really once again highlighted how so very important it is to improve diagnosis.

Please take a look at the 3 Tenners appeal data, this is new data, calculated from the Census of 2011, it shows that in the UK it is estimated that 12,000 women in the UK remain undiagnosed, of which 2,000 of those are 14 years and under.

3 Tenners Appeal 2013

10 minutes, 10 miles, 10 hours

Skipping, swimming, walking, running, climbing, cycling, bake sales, car washes, if you wish to help, bear in mind that everything you do not only raises vital funds, but raises awareness too.

It is estimated that 1 in 2000 live female births have Turner Syndrome. 12,000 in the UK remain undiagnosed… 12,000 whose hearts need close monitering, 2,000 of which are 14 years and under.

Thank you for your support, together we are making a difference.

TSSS - 3 TENNERS APPEAL

UK AREAS

Female Population Census 2011

1 IN 2000 WITH Turner Syndrome estimated BASED ON 1 IN 2000

25% Diagnosed estimated based on Data available

Estimated Total girls and women remaining undiagnosed

North East

1,327.200

663

166

497

North West

3,587.500

1794

449

1345

Yorkshire & Humber

2,685.700

1342

336

1008

East Midlands

2,298.700

1149

287

861

West Midlands

2,838.700

1419

355

1065

East England

2,971.100

1485

371

1113

London

4,140.700

2070

518

1554

South East

4,395.500

2197

549

1647

South West

2,698.300

1349

337

1011

Scotland

2,728.000

1364

341

1023

Wales

1,559.200

780

195

585

Northern Ireland

918.300

460

115

345

TOTALS

32,148.900

16072

4018

12054

UK 0-14 YEARS ESTIMATED NON DIAGNOSED

ENGLAND

Females

1 in 2000 with TS

Estimated 25% diagnosed

Estimated non diagnosed

0-4 AGE

1,620.300

810

203

608

5-9 AGE

1,451.400

725

181

544

10-14 AGE

1,503.900

751

188

563

TOTAL 0-14

4,575.600

2286

572

1715

         

N IRELAND

       

0-4 AGE

61,800

31

8

23

5-9 AGE

55,400

28

7

21

10-14 AGE

57,700

29

7

22

TOTAL 0-14

174,900

88

22

66

         

SCOTLAND

       

0-4 AGE

143,600

72

18

54

5-9 AGE

131,600

66

17

50

10-14 AGE

142,000

71

18

53

TOTAL 0-14

417,200

209

52

157

         

WALES

       

0-4 AGE

86,700

43

11

32

5-9 AGE

79,400

40

10

30

10-14 AGE

86,600

43

11

32

TOTAL 0-14

252,700

126

32

95

TOTAL UK 0-14 ESTIMATED UNDIAGNOSED

2032

If you were to spend £10 on initial outlay, how much money do you think you could turn that £10 into ?

Some people will double it, some will treble it, some will make hundreds, some will make thousands....... What could you do?

Bake Sale: spend £10 on ingredients turn it into £…………

Car Wash: spend £10 on buckets and sponges, turn it into £…………

Car Boot: spend £10 on entry fee, ask friends and family to donate items, and turn the £10 into………

Knitting: spend £10 on wool, turn it into £ …………

Hamper: spend £10 on goodies and from donations from others, sell tickets to a closed group at £1 each…. Turn it into £ ……

What else… whatever you do…. Let us know please how you did it, and that you took the £10 challenge….. 

Good Luck

ASDA are running a new and exciting initiative as part of their Community Life Project, The 'Chosen by You, Given by Us' scheme.

Every two months, three Charities will be chosen to be put on our Community Life Board in many stores foyers, and every time a customer shops with us, they will be given a Token to use to vote. The customers then have to decide which of the three charities they would like to give their vote to, and place the token in the relevant voting slot.

At the end of the two month period, the charity with the most tokens will recieve a £200 grant, whilst the two runners up will also recieve a £50 grant each.

Please contact the Community life champion in your local ASDA store, and nominate the TSSS as a chosen charity. If you need any help with forms, then just give us a call or email and we will help.

Good luck.

TSSS

The official website of the Turner Syndrome Support Society (UK).

© Copyright Turner Syndrome Support Society 2017 Reproduction of photographs from this website is strictly forbidden

Help reduce our costs

The TSSS is a small charity and, although very happy to send out information on Turner Syndrome to all those who request it, does not have the funds to do this for free.

When requesting information please make a donation to cover the cost of photocopying and administration. Thank you.

Get In Touch

12 Simpson Court
11 South Avenue
Clydebank Business Park
Clydebank G81 2NR
0141 952 8006
0141 952 8025
turner.syndrome@tss.org.uk