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TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 17:34 Page 1
VOLUME 6: ISSUE 18: SUMMER 2019
Charity Reg No. 1080507 Scottish Charity No. SC037932
Open day fun…
Sheffield in June 2019 • See page 6
Conference Booking
Information
page7
Friendship Groups
page 10
TURNER SYNDROME SUPPORT SOCIETY NEWSLETTER
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:04 Page 2
Contents e ll J u l i e !
Editor’s Message ................................................................2
Important Dates .................................................................2
Fa r ew
Chair’s Report......................................................................3 Our editor Julie is stepping down
Teen Rep’s Report.............................................................3 due to family and work commitments.
Arlene’s Report .................................................................4 She has done a marvellous job for many years
Get Well Wishes .................................................................5 now and we really do appreciate all her hard
Membership Reminder.....................................................5 work and dedication. We wish you and the
family all the best for the future, from all the
TSSS Open/Seminar Days..............................................6
TSSS members.
TSSS Conference 2019 Booking Information..........7
If you are interested in the position of editor
Friendship Groups ...........................................................10
please contact Arlene at the TSSS office
TSSS Website......................................................................11 turner.syndrome@tss.org.uk for more
Facebook, Twitter & You Tube ....................................11 information on what is involved.
Fundraising News.............................................................12
Arlene’s 2019 Diary Dates of Interest .......................13
Twenty for 20 Appeal ....................................................14
Cardiac Alert Cards .........................................................14
Important Dates
Condolences.......................................................................15 TSSS Dates for your Diary
Donations List....................................................................16 Conference booking deadline is the
Easyfundraising & Amazon Smile ..............................17 1st of August 2019. Late bookings will
Great Weather Lottery...................................................17 incur a fee. Kids club is almost full so
Fundraising Regulator ....................................................17 please book promptly
Members Contact List 2019/2020.............................18 TSSS 19th Annual Conference
Membership Update........................................................18 11th-13th October 2019
GDPR Update.....................................................................18 Park Hall Hotel, Chorley, Lancashire
Hi, my name is Laura… ...................................................19 PR7 5LP.
Penny’s Great Glen Challenge ....................................19
Oxford Seminar Day
International Conference 2020 .................................20
2nd November 2019 –
TSSS Tips for buying shoes..........................................21
Places are filling up fast.
Some useful websites .....................................................21
TS International News....................................................22 Turner Syndrome
The Office for Rare Conditions ..................................22
International Conference
Women with TS who have been pregnant
(TSI2020)
– we need your help! ..............................................................................................23 16th -20th July 2020
TS International Group Website ................................23 Stirling University, Stirling, Scotland.
SPEG.....................................................................................23
TS Clinical Practice Guidelines ...................................23
TSSS Contact information ...........................................24
Please remember to
renew your membership –
see page 5
2 AspecTS Magazine
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:04 Page 3
Chair’s Report
Hello everyone,
Well it’s the best time of the year, SUMMER TIME and I am sure that
a lot of you will soon be packing for your summer holidays once the
school year finishes. Stephen and I are off to Cambodia in July
which we are both looking forward to, as we have never been there
before.
What has been happening in the very busy right now so please be
Wall household!!! patient if you are trying to get a hold
I went up to Glasgow in April as my of Arlene as she will always get back
nephew was getting married… I got to you. The best way to contact
them is via email.
one of the biggest surprises ever. I
went to visit my sister Lesley and my Steve and I are going to the next
Swindon friendship meeting on 15th (that would explain my constant
other sister, Michelle from New
June and we are hoping to meet up headache!!!! I have been to the
Zealand, appeared from nowhere
along with my niece Kirsty. I was so with old friends and new friends. hospital (I should get shares with the
happy to see them both. I was very poorly in March and April NHS), and they attempted to "pull it
what with a chest infection which down" which was very painful to say
I had a really good week up in
developed into pneumonia and then the least and it didn't work. I am now
Glasgow, came home and went back
pleurisy. I am on the road to waiting to have surgery, which
up the following week to spend
recovery now. In saying that, I have should be soon, as the pain is
more time with them which was
another issue going on with my constant right now.
lovely. I came home for a rest !!!!!!
nose. I have a damaged septum
The office has been very busy as which has created a hole in my nose. I will finish now and I hope that you
usual but they have a lot to organise. Anyway a few years ago I had a all have a lovely summer and that
As well as preparing this year’s "button" in my nose to block the the weather is kind to you all.
Conference in October they are also hole. Two weeks ago I sneezed a lot
organising the next International TS and the button on one side moved
( M r s T SSS)
Susie
Conference in July 2020 at Stirling in further up my nose so much so that
Scotland. Arlene and Carlene are they think that it is in my sinus area
Teen Rep’s Report
Hello wonderful people, I hope you are all well. Since I last spoke to you in
the AspecTS magazine, I have celebrated my 18th birthday! I had a fab
time celebrating it, with family and friends, and even some of my TS
sisters too! That does, however, mean that I am officially an adult, oh
gosh!
Anyway, I wanted to take this opportunity to say to anyone who is or has
taken exams recently, well done! I know how tricky exams are for some of
us, I personally hate them! However, we are all
such determined and talented young women,
we can get through anything when we put our
minds to it! I know it’s not easy, trust me I’ve
been there, but all the hard work that you have
done leading up to and during the exams will
pay off in the end on results day, when you all
get the amazing grades that you deserve!
Another thing, conference is only a few months away.....wooooo!! I hope that
you have all booked your rooms and are excited for another year of
awesomeness from the amazing TS committee!! I certainly am!
x
Lots of love to you all
Grace x x
Volume 6 • Issue 18 • Summer 2019 3
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:04 Page 4
Arlene’s Report
I hope this newsletter finds you all well and you are looking
forward to the summer holidays.
I am pleased to report that I am and to answer queries is
feeling much better and appreciated. We have great
recovered from my shingles. support from the committee in
Thank you so much for all the lots of ways but, it is worth
lovely messages. Peter and I remembering that on a day to
finally went on a cruise and to day basis it is just Carlene and I
the Monaco Grand Prix which we running the office. On that point,
loved. It gave us the chance to I would like to say a massive new GDPR rules you have to
really relax. The girls and I have a thank you to Carlene as she has consent to staying on our
week in a villa the first week of been working hard manning the database. We will have no choice
July, it will be a very relaxed office when I am out at meetings but to remove you from our
break. Then it is back and lots of and events and she is doing a database and we don’t want to
work getting ready for our great job. lose you. You, the members, are
conference in October and the the most important part of the
The TSSS trustees and
International in July 2020. So society and we are nothing
committee members continued
lots to keep me busy. without you.
support is very much
Please do take some time to appreciated. It takes a lot of hard Please consider setting up a
read through the newsletter work and dedication to keep the standing order, it really does
even repeated articles have been society running. Please be sure help us from an administration
updated with additional to read through the newsletter point of view. Chasing you for
information. Don’t forget to and keep checking our website membership is time consuming
check out the website and for all the details. I am pleased to and costly. Those of you who
Facebook to keep up to date welcome Jane Armytage back to have been members for many
with all the news and events. If I years, can you please check that
the committee. Jane provides
am not in the office, Carlene will if you are paying by standing
valuable input to the publications
do her best to help and don’t order it is for the correct amount,
and projects sub-committee. If
forget we have a wonderful team it should be a minimum of £30
you are interested in
of trustees and committee per year or £2.50 per month?. If
volunteering your services to the
members that are there to help you are paying via the online
TSSS please contact the TSSS
too. shop or by cheque or postal
office and we can take you
In between all of the above, I through what is involved. order the cost is £35 per year.
continue to do the normal day to
day duties that are required in
Our thanks to our benefactor
companies Ferring, Merck, Novo
GDPR
the office, such as speaking to We are taking this opportunity to
Nordisk and Pfizer who help us
those who have had a new not only obtain your consent but
to deliver services to our
diagnosis etc. As many of you also to update our information to
members, their help ensures we
know from experience how ensure that you are not only
difficult that can be to begin continue to offer support and
aware of the data we hold, but
with. Therefore I always try and information to members
also to ensure that this is up to
give families the time that they throughout the country. We very
date. If you have not already
need. I support members by much appreciate their support
completed the survey, full details
phone, e-mail, Facebook, through unrestricted educational are on our website.
messenger, twitter etc. All the grants and projects.
Thank you for your support with
paperwork that is involved and,
believe me, there is a lot of it. All Members this exercise.
Thank you so much to everyone Please follow this link to
Preparing for Open Days and
who renewed their membership complete the survey or opt out
Conference and processing all
on the 1st of June this year. Your https://www.surveymonkey.co.uk
the bookings and inviting all the
support is invaluable to us. If /r/TSSS2018
speakers. That is why your
support in giving us plenty of you have not paid yet please do If you have any questions or
notice to send things out to you so ASAP. Especially now with the need help completing the survey
4 AspecTS Magazine
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:05 Page 5
Get Welli shes
please do not hesitate to contact Arlene
at the office.
W
If you can afford an extra couple of pounds
a month please join our Give it up Give it
in Appeal it really does help us greatly and We have had a number
is very much appreciated. of our TS members who
have been ill and had operations over the last few
I have created a Just Giving Page
months. We would like to wish you all well and
specifically for this appeal. Please help us
speedy recovery.
by donating £20 on if you are able to
support us follow this link. Susie Wall has had a lot to cope with following
many surgeries and has more surgery ahead of her.
https://www.justgiving.com/Arlene-
She has a new knee and is hoping to have her other
Smyth1?utm_source=Sharethis&utm_medi
knee replaced soon. Over the last few years you
umfundraisingpage&utm_content=Arlene-
have been through so much. We hope you recover
Smyth1&utm_campaign=pfp-
well Susie, know that we are thinking of you and
email&utm_term=4yrV3E94K
ne x
sending you lots of love xx
dy A r l e
La
Best wishes Cliona Robertson is waiting for an operation it can
be an anxious time. Know that we are thinking of
you and sending you lots of love xx
I attended the Scottish Paediatric
Laura Mason has had her surgery and was incredibly
Endocrine Group (SPEG) 24th-25th
brave, wishing you a speedy recovery. Know that we
January in Perth. It was a good
are thinking of you and sending you lots of love xx
opportunity to meet up with many
doctors and nurses across Scotland. We Rachel Coysh has been very ill with complications
all work together to do our best for the post-surgery. She is improving every day despite
patients. having a long recovery ahead of her she is showing
TS spirit. Know that we are thinking of you and
I was proud to attend the European sending you lots of love xx
project on Registries for Rare The lovely Sam has been in a lot of pain with her
Endocrine Condition (EuRRECa) 10th back and is now on crutches. We are thinking of you
12th in Budapest. This is very exciting, Sam and wish you speedy and full recovery lots of
working to create registries on Rare love xx
Conditions across Europe. I did enjoy We are aware that some of you are waiting for
taking part and learning from the others operations to take place. Just to let you know that
involved in the project. Budapest was we are all thinking of you. Please keep us posted
lovely the little that we saw. on how you are?
I attended the Clinical Updates 8th-10th
April 2019 in Birmingham it was a very
good meeting with many of the doctors
of the future. All very interested in TS.
Membership
The adult endocrine nurses always visit
our stand to get any new information to & GDPR
share with their patients. It was a great
few days. Reminder
Membership 2020 is due on the 1st of June 2020
and costs £30 for annual standing order payments
or £2.50 per month by standing order. Overseas
membership is £35 a year. As the administration
costs of processing cheques is now higher, if you
wish to continue to pay by cheque or postal order
the cost will be £35 a year. Remember you have
control of a standing order not us. All members must
complete the GDPR survey, one per family please do
it ASAP. If you have any queries please do not
hesitate to contact the TSSS office. We are happy to
help.
Volume 6 • Issue 18 • Summer 2019 5
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:06 Page 6
TSSS S e m in a r D ay s
Open -
TSSS Open Days are relaxed We charge £12 per adult and £6 you are struggling call the office
and informal events to bring per child this is to cover the cost 0141 952 8006 and we will help
local families together to of refreshments and a light lunch. you to book over the phone.
share their experiences. Local We do apply for grants to cover There is also a link on our website.
the costs of our Open Days. If we
doctors, nurses and TSSS To book your place please go to
do get grants to cover the cost of
committee members are the website www.tss.org.uk or
the event, the charge will be
available to offer help, refunded. If the cost is a barrier to from the TSSS office on 0141 952
support and information about you attending please contact 8006 or e-mail Arlene
Turner Syndrome and the Arlene, she will be happy to help. turner.syndrome@tss.org.uk and
TSSS. Children are welcome We now use an online booking return it to us.
but there is no child care system called Eventbrite it is Places are limited please book
provision in place. quite simple to use. However if early.
Our Awareness Open Day this year was in Sheffield on Saturday
22nd of June 2019. We were joined by Prof Paul Dimitri the
Paediatric Endocrinologist and Sally & Natalie Endocrine Nurse
Specialists who shared their expertise with us. Our thanks to TSSS
committee members Jane, Charlotte, Kylie along with volunteers
Emily, Phoebe and Emily all there to offer help and support.
Following on from the success of the
previous Oxford Seminar Day, Dr Helen
Turner and her team have kindly offered to
host another day on Saturday 2nd November
2019 from 11am until 4pm at OCDEM, Churchill
Hospital, Headington, Oxford OX3 7LE. Theme
of the day is sharing up-to-date medical
information and services along with patient
experiences, from the Oxford TS Specialist
Clinic Team. This event will mainly be covering
adult services although will be of interest to girls who are nearing
transition to adult services. The event is not suitable for children
and we are unable to offer any childcare facilities, sorry.
To book your place please go to the website www.tss.org.uk or go
to https://www.eventbrite.co.uk/e/oxford-seminar-day-tickets-
58367647204, from the TSSS office on 0141 952 8006 or e-mail
Arlene. Places are limited please book early.
6 AspecTS Magazine
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:06 Page 7
TSSS Conference 2019
Booking Information
Our 19th Annual Conference & WelcomeBreak.co.uk and ask for a
AGM is on the weekend of the 11th room from the TSSS allocation. TSSS
- 13th of October 2019 at Park Hall Conference rates are:-
Hotel, Chorley, Lancashire PR7 5LP Single room @ £50.00 per room,
Tel 01257 455000 per night - bed and breakfast
Email parkhall@lavenderhotels.co.uk Twin or double room x 2 guests @
We are looking forward to seeing you £55.00 per room, per night - bed
all at this year’s TSSS conference, to and breakfast
celebrate our 19th conference and Triple room x 2 adults and 1 child @
begin our 20th year, seeing how far To help with costs, and as many
£60.00 per room, per night - bed
we have come is amazing. Thank you delegates arrive late on the Friday,
and breakfast
to all our wonderful members, your Friday's dinner is optional. It is a two
Alternatively you can book a bed &
continued support makes such a course carvery with a vegetarian
breakfast in the area. If you are
difference. option and will be available from
intending to do that, you should book
5.30-9pm at a cost of £17.50 per adult
This will be our 10th visit to the Park direct with the hotel or B & B.
and £8.50 per child. We have also
Hall Hotel and as a venue it has Coopers Taxi on 01257 261666 is just made Sunday lunch optional, if
proved to be hugely successful. The £4 from Ramada to Park Hall and £8 chosen, a two course lunch will be
TSSS has done its best to keep the from the train station to Ramada or provided at £14.50 per adult and
costs as low as possible and have Parkhall. Please note the short cut £6.95 per child. Likewise this should
secured a good value price for the through Charnock Richards Services be booked via the TSSS Eventbrite.
weekend. The accommodation, some is now closed. You will receive a fine
of which has been recently We appreciate that in current times
if you use it as cameras have been
refurbished, caters for families, every penny counts and we have
put up. We know this is not ideal but
couples and individuals. All rooms done our best to keep costs as low as
is beyond our control. Ramada guests
and chalets are en-suite, with tea and we can. Please note that the TSSS do
may be allowed through, check with
coffee making facilities and TV. The not make any money from
them.
hotel can meet most needs, including conference, the money raised from
Then to secure your delegate place at
vegetarians, gluten free and diabetics. the raffle and stalls etc. goes to the
conference you need to book with the
You will need to inform us on the help with the additional costs
TSSS via the EVENTBRITE -
booking form if you have any special involved with conference, such as
https://www.eventbrite.co.uk/e/turn
dietary requirements. There is plenty volunteers’, staff and speakers’
er-syndrome-support-society-uk-
of car parking on site. expenses, administration etc.
conference-agm-tickets-
I am so sorry not all of you managed 58082253584 by the 1st August 2019 It is well worth joining your local
to get rooms at Park Hall this year. at the latest. Please note, any Carers Centre as they are a great
Demand is higher than can be weekend delegates bookings source of local knowledge and it is
accommodated at the moment. received after the 1st of August and always nice to talk with others who
However, we have arranged a very any daily delegate bookings after the understand the stresses of caring for
good rate at the Ramada and they 15th of September, will incur an a loved one. You can also ask your
still have rooms available. We are additional £10 per head late booking local Carers Centre & The Family
working on some sort of shuttle fee, this is to cover the additional Fund for advice on any grants that
service, more details will be available admin involved. are available to assist with the costs
via the website and Facebook groups. of attending. They may be able to
Please note, we cannot make refunds
The Ramada, Chorley South point you in the right direction.
once a booking has been made. We
(Formerly Days Inn) at Charnock recommend you take out insurance if Alternatively, you can ask your
Richards Service Station, this is a you deem it necessary. If you have hospital social worker if there is any
newly refurbished hotel. To reserve any questions, please do not hesitate way they can help. TSSS members
rooms at the Ramada please call to phone the TSSS office where have had their costs met in the past.
them directly on 01257 791746 or Carlene and Arlene will do their best Apply promptly for a response
Email Ramada.ChorleySouth@ to help. before conference.
Volume 6 • Issue 18 • Summer 2019 7
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:07 Page 8
Conference Registration opens at
Saturday Programme starts straight after breakfast at 9am and continues
2pm on Friday for weekend
throughout the day. The theme for this year's conference is Coping with Stress
delegates only; there will be no
and Anxiety. We will have a wide range of talks and displays throughout the
admittance before 2pm. Daily
weekend. There is a full day of talks from some of the top specialists in the
delegates registration opens at
country. A draft programme will be available on the website www.tss.org.uk or
8.30am on Saturday morning. You
from the TSSS office on request. The following specialists have been invited to
will need to register at the TSSS attend this year's conference: Mr Haytham Kubba, Paediatric ENT Specialist •
registration desk for your Dr Melanie Davies, Fertility Specialist • Professor David Skuse, Professor of
programme, name badges and Behavioral Sciences • Prof Gerry Conway & Dr Helen Turner, Consultant
complete the necessary forms. You Endocrinologists • Claire Humphreys, Specialist Nurse • Dr Stewart Rust & Dr
can check in at the hotel reception Jackie Nicholson, Clinical psychologists • Dr Gordon Watt, Specialist in
as you would at any other hotel Podiatry. Mindfulness session – we have some very talented members who are
from 2pm. You pay for your room at sharing some of their specialist knowledge with us. Then it is time to get your
reception. If you need extra towels glad rags on and attend our dinner and show where you can capture the
or a light bulb needs replaced etc., moment by having your photos taken by our professional photographer
speak to reception and they will be Thomas and dance away into the early hours.
happy to help. You can visit the Park
Suite to see the TSSS Goodies stalls Sunday Programme we will start a little later, as we will have had a late night.
where you will be able to browse We will have a range of workshops available for you to choose from. The
the various stalls and displays, meet workshops will include driving tips, how to get the most out of your Adult TS
other members and catch up with clinic and Alternative Therapy. Plus there will be a variety of female heart to
friends old and new. Anyone heart, male only and sibling sessions. There is the opportunity to attend at
wearing a smiley face on their least two sessions - one in the early morning and another late morning.
badge is attending their first
conference and will receive a warm Children's Programme will run concurrently with the conference programme. It
welcome from the TSSS family. A will be in the Eccleston Suite. Our Volunteers Kylie, Emily, Ellie, Natalie,
hot carvery meal will be available Jazmine and team are all CRB checked, with experience and currently work as
from 5.30pm - 9pm at an additional qualified nursery nurses/teachers. There will be a range of age appropriate
cost for those who have booked. activities. The age range for the activities will be between 0 and 12 years. There
Arriving early on Friday, allows you will be creative art sessions with painting, colouring, craft making etc. We will
plenty of time to make use of the charge £32 per child to cover the costs of the activities, entertainment etc. We
facilities that are available at the have tried to keep the costs as low as possible. Parents will remain responsible
hotel including: the pool, gym, for their children at all times. Children must be signed in and out of each
sauna, beauty salon (treatments morning and afternoon sessions by parents. Please collect your child promptly
must be pre -booked). We get a 10% to allow our volunteers to get lunch. There will be dance classes, one for
discount on all treatments available juniors up to 7 years and one for Inters 7-12 years, where Sam & Daisy will
at Cleopatra's. To book a treatment teach the children a simple fun routine which will be performed on Saturday
please call 01257 452400. You can night. Sunday morning activities are in the Eccleston Suite, the children will be
also allow time to take a walk in the able to watch a family film. Then we will have a Children's Entertainer who will
grounds and the bar is open in the entertain everyone. There will be lots of fun and games for everyone. Please
lounge, so that you can relax and note the costs are subject to change depending on the numbers.
have a chat.
Teen’s Programme will run on the Saturday morning, this year's theme is
Friday Programme - is only open to “We are the Champions” from Queen. Groups of girls will perform songs by
weekend delegates Conference Queen. Sam our Artistic Director, Daisy, Meg C, Ella and the Teen reps Zoe and
registration opens at 2-9pm it is Grace will put together a running order and help the girls practice during the
your chance to register, meet old course of the morning. Check out the conference Facebook page for more
friends make new ones and see that information. There is a charge of £32 each for attending the workshop to help
various stalls we have available. with some of our costs. The rules for 2019 are you can only attend the Teen
Look at previous conference photo Club if you have already started secondary school. Once you are 20 years old
albums. Pick up the many free you should join the adult programme. We need to have the correct numbers of
information leaflets we have volunteers in place. Parents remain responsible for their children at all times.
available on diet, exercise, heathy
eating, foot care, fostering,
adoption, employment and much
more. Attend our first timers
welcome meeting, show rehearsals
with Sam and Daisy and her
amazing team of volunteers. Or
have a drink at the bar and relax and
enjoy a natter.
8 AspecTS Magazine
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:07 Page 9
Below are details of how to book your place at conference this year, it is a little different so please read
carefully.
Step 1 Book your hotel room at the Ramada as Park Hall is full.
Having booked your hotel room, Step 2 is book to attend the conference with the TSSS. This year we are going to
use Eventbrite an online booking system, which seems to be working well. Eventbrite is very simple to use, if you
do not have access to the website call the TSSS office and we will take you through everything step by step.
Step 2 Book your conference place with the TSSS by following the link to our Eventbrite page -
https://www.eventbrite.co.uk/e/turner-syndrome-support-society-uk-conference-agm-tickets-58082253584
and completing the online booking form. If you do not have online access, please call the office and we will help.
TSSS Conference 11th-13th October 2019 Registration
Booking deadline is 1st August 2019 – a £10 per head late booking fee will apply
for any booking made after this date.
Weekend Delegate (Fri, Sat & Sun) £104 per adult 2-16th b/day £53 per child
(Includes Sat Evening Dinner, Show & Friday access to conference)
Daily Delegate – Saturday ONLY £60 per adult 2-16th b/day £30 per child
(Does not include Saturday Dinner or Friday access to conference)
Daily Delegate Sunday ONLY £30 per adult 2-16th b/day £15 per child
Additional costs (covers the required supervision, activities and crafts)
Children’s programme – Kids Club 0-12 £32 per child
Musical performance – Teens Club 12-20 £32 per child
Optional extras
Teen Conference Zipper - small (8-10) medium (12-14) large (16-18) £26 – pre-order only
Same PINK as last year with different PURPLE FONT “TEAM TEENS” not available at conference
Friday buffet dinner (Weekend Delegates ONLY) £17.50 per adult 2-16th b/day £8.50 per child
Sunday Lunch £14.50 per adult 2-16th b/day £6.95 per child
Saturday Dinner, show and disco ONLY £40 per adult 2-16th b/day £20 per child
(Saturday Dinner is included in the weekend delegate price)
https://www.eventbrite.co.uk/e/turner-syndrome-support-society-uk-conference-agm-tickets-58082253584
Once you have booked your place you can be added to the “Conference 2019 Facebook Group” So please
keep checking the website for information, we post information as and when we get it. Remember you must be
a fully paid up member of the TSSS to attend the conference and have completed your GDPR survey. Please
ensure your details are up to date and correct prior to conference.
Please check the website www.tss.org.uk. I am pleased to tell you that the programme is coming on nicely and
we have had a number of speakers confirmed. We will also have a siblings’ session on the Sunday and, if time
allows, the Friday evening.
Volume 6 • Issue 18 • Summer 2019 9
TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:07 Page 10
Friendship
Groups…
Please feel free to contact any of our friendship groups,
please see details below. For more information on their
events visit our website. www.tss.org.uk click on About Us
and then Friendship Groups.
Friendship Group Co-ordinator
Hayley Cleaver • 07763 606597
England Essex Friendship Group
Ella Phillips • 07815 562603
Central England Friendship Group
ella.phillips26@hotmail.co.uk
Jackie O’Keeffe • 07977 486898
or Amanda McGowan
shonaemily@aol.com
07986 951085
or Judy Burns • 07932 694131 Swindon & Oxford Friendship Group
mandy@mcgowanclan.co.uk
judy5579@talktalk.net Emma Fitzpatrick • 07763 980579
Greater Manchester & Merseyside emma.fitzpatrick1@ntlworld.com or
Cumbria & Borders Friendship Group Mollie Dowler • 07930 301599
Friendship Group Ellie Hatcher • 078144 94698 mollie.dowler@gmail.com
Rachel Partington elliehatcher@hotmail.com
07752 962250 or Emma Taylor • 078346 86691 Isle of Man
rachelpb72@gmail.com or ejbailey15@yahoo.co.uk Manx Friendship Group
Janet Williams • 07926 072418 Denyse Hill • 07624 201868
jansi2@btinternet.com Home Counties West manxtsfriends@manx.net
Friendship Group
Devon Friendship Group Amanda Woodhall • 07527 751022 Wales
Louise Giles • 07763 212785 amandashort82@hotmail.com Mid & South Wales Friendship
gileslou@hotmail.com or Katherine or Caroline Cooper Group / Ladies with TS Group
Pearce • 07999 982051 07966 645255 Hayley Cleaver • 07763 606597
cazhoward73@hotmail.com hayleycleaver@hotmail.co.uk
Dorset, Avon, Wiltshire and
North Wales Friendship Group
Somerset Friendship Group Kent Friendship Group
Gina Maddison • 07976 220669
Ali Andrews • 07912 983688 Julie Winstanley • 07768 803469 gina_while@yahoo.co.uk
matt.sas@live.com juliewinstanley@live.co.uk or Alison or Eleri Jones • 07769 153280
Dowle • 07980 545319 eleriajones@gmail.com
Durham and Newcastle
alisonleighriches@hotmail.com
Friendship Group South Wales Friendship Group
Christine Morrison Leeds & Yorkshire Cathryn Jones • 07881 958854
07740 933475 Friendship Group Richard Jones • 07979 578893
cjmorrison58@gmail.com Jane Raper • 07879 682125 richardallanjone@hotmail.co.uk
or Julie Champion jane@tsssuk.org.uk or
07531 172860 Charlotte Raper • 07468 494478 Ireland
charlotte@tsssuk.org.uk Northern Ireland Friendship Group
jachampion@virginmedia.com
Majella McParland • 07855 324776
East Anglia Friendship Group London & South East majella.mcparland@ntlworld.com
Joy Taylor • 07929 557726 Friendship Group or Naomi Campbell
joycataylor@hotmail.co.uk Lisa Whiting • 07748 386580 07973 383761
or Sian Smith • 07725 885202 lisa_w@talktalk.net Southern Ireland Friendship Group
sian3x@yahoo.co.uk or Claire Mid Counties Friendship Group Triona Keane • nursetmk@gmail.com
Garrod • 07580 144585 Emma Dimbleby • 07773 622157
claireprima79@outlook.com or emma.dimbleby@gmail.com or
Scotland
Victoria Flute • 07950 436584 North East Scotland
Katrina Squires • 07984 096762
Friendship Group
vkhf1978@gmail.com keyneoncake@gmail.com
Judy McWilliam Robertson
East Midlands Friendship Group Rutland & Leicestershire 07788 271855
Tracy Glasgow • 07798 914796 Friendship Group j.robertson82@btinternet.com
tracyglasgow231@hotmail.com Tammy Ena Richards Scotland Friendship Group
or Jess Timson • 07725 784385 07512 260559 Arlene Smyth • 07947 554587
jessbarry1986@yahoo.com tamerauk@yahoo.co.uk turner.syndrome@tss.org.uk
10 AspecTS MagazineTSSS Newsletter – July19.qxp_Layout 1 26/07/2019 12:23 Page 11
TSSS
Website
Please checkout our website, especially
for up to date information on the TSSS UK
Friendship Groups.
We have added some of the lovely photos
taken by Thomas at conference.
Don’t forget our online shop.
You can re-new your membership in the
shop and complete the GDPR survey too.
Please keep checking to see what’s new
on www.tss.org.uk.
Please let us know what you think?
Facebook, Twitter Twitter
We are new to Twitter and
& You Tube doing our best! The TSSS
official address is
https://twitter.com/TurnerSyndSoc my
Facebook own one is
https://twitter.com/TSSSARLENE we are
You can see the TSSS (UK) Facebook page & like us
hoping to use both Twitter and Facebook
www.facebook.com/TSSSUK, this is our official public page.
to help us raise awareness on Turner
There are numerous facebook groups on my page – Arlene Syndrome & the TSSS. Any tips or
Smyth – some are open to non- members and some are closed suggestions are welcome. Ella has been
to TSSS [UK] members only, all are closed groups. To avoid working very hard on raising our profile –
confusion I have added “OFFICIAL “to all TSSS [UK] groups. we now have a few celebrity followers.
There are hundreds of TS groups, it is important that just
If any of you have or know any celebrity
because I may be a member of a group does not make it part
followers please help us raise awareness.
of the TSSS. The Turner Syndrome Support Society, Member-
A massive thank you to Ella, Charlotte &
only group is given priority, if you have paid your membership
Ellie for all their help in raising our profile.
and are not yet on the group, send a request to join, and I can
add you to the group. Please note you must answer the
questions (if you do not answer the questions you will not be You Tube
added on). We now have a
You Tube Channel, please visit:
We also have Ask Arlene and Fabulous Faces of Turner
www.youtube.com/
Syndrome to name just a few. There are a number of
TurnerSyndromeSupportUK
trustees/committee members who are regular users who help
us monitor the groups, please remember the TSSS can accept And check out our Animated Health
no responsibility for other Facebook user’s comments. If you Sketches. Our latest sketch is
are concerned about a posting please let Arlene or any of the “Growth Hormone for Turner Syndrome“
Trustees know and we will do our best to help. It is regrettable https://youtu.be/4qieQT3UrBw
that because of the actions of a few we have had to reduce our and “What is Turner Syndrome”
groups and add pre-post approval. Please look and observe https://youtu.be/fA4jmD4OR-g
the rules for the groups. Please think about who you are Both sketches are sponsored by Pfizer
messaging to and only ever between 9am and 9pm if people Ltd. We are very grateful for their
don’t reply it is because they are busy, be patient and support.
courteous at all times or you will be removed from the groups. And “The Importance of Growth
If you want to ask me a question and get a prompt reply Awareness”
please e-mail ‘Arlene’ at Turner.Syndrome@tss.org.uk directly. https://youtu.be/iPD1jHQYonY
Just added - “Helpful Tips on TS nails - A
Facebook messages are not given priority and answered only
guide on how to cut toe nails in girls and
when I have time. I do my best to keep up but, sometimes it is
women with TS” by Mr Gordon Watt our
not easy. Our Social Media Sub-committee are currently
podiatrist. Please share all of these as
reviewing and updating our policy.
widely as you can.
Volume 6 • Issue 18 • Summer 2019 11TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:08 Page 12
Fundraising News…
We are well into conference planning now. Conference is where thanks to your generosity, we raised
much needed funds, so thank you everyone.
Our fundraising sub team (Ali, Charlotte, Matt and Phil) who did a fantastic job and worked so hard over
the weekend last year. Are ready and willing to work just hard again this year. Thank you to each and
every one of you, and many of our wonderful members who step in and help to give us a break.
We launched our new appeal, which is called Give it Up, give it in, and we have already started to see
some of you signing up to help us, further info on the appeal can be found below.
Our teens have also launched the Smarteen challenge, can’t wait to see who will be first to pay in on their
own just giving page. Further info on the Smarteens can be found below.
Give it up, Give it in Appeal
Our appeal for 2018 and beyond, is to increase the number of
supporters who donate a regular amount each month. he
commitment strengthens the society, ensuring that the support
we give is protected for the future. You can choose the amount
you wish to give per month, if you think of it as…
£3 as giving up a takeaway coffee a month
£5 as giving up a meal deal a month
£10 as giving up a takeaway a month Merchandise &
Some choose not to give up
anything but set up the gift
Publications
We have some new items
anyway.
available to pre-order for
Whatever you can do, we thank collection at conference. Please
you from the bottom of hearts. see conference Facebook page
Fundraising is ongoing, we are a and the conference page on the
small charity, a great charity, and website for more details.
our support is vital to enrich the Please do take a look at the
lives of those associated with online shop on the website
Turner Syndrome. Thank you. www.tss.org.uk
Easy to do: www.justgiving.com/Turnersyndrome, We have fantastic publications
top right, click make a monthly donation. including:
“Lifelong Guidance and Support”
Book
Smarteen Challenge “Helping your Child Thrive and
Succeed at School” booklet
Teen Challenge and anyone else who wants to join in!
“Employment booklet”
How many can you fill? Do you know you can collect over
£10 of 20p’s in a Smartie tube? “Partner’s booklet”
Your mission, please, is to see if you can raise £10 by “Who is the Woman I am Less than
conference and pay it on the Smarteen Just Giving page. Anyway“ Self Esteem booklet
How you raise those 20p’s is up to you. I wonder who fills the Fact Sheets Series on numerous
most? I will leave the teens reps and Ella and Meg subjects – do take a look they all
to keep you posted on how you lovely girls contain great information and tips.
are doing. You can also see the total rise We will shortly be launching and
on the Just Giving page. updated “What is Turner
Have fun and thank you for Syndrome” and a new “How
your support. funds donated to the TSSS (UK)
www.justgiving.com – are spent” leaflet these will be
please search Ella Phillips available via the website and
to find the page. TSSS office.
12 AspecTS MagazineTSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:09 Page 13
Fundraising Raising
Awareness
& Raising Friendship Information
Awareness Reducing
Isolation Listening
Your support enables the TSSS to
make a difference.
Thank You!
Research Sharing
Educating Believing
Supporting Understanding
Caring
Fundraising Stories on
We are always humbled by the support given by members and non members. Do look at our Just Giving
Pages and see the amazing challenges our supporters are doing. Whether it is £’s or hundreds and
thousands of £’s everyone makes a difference so thank you, we really appreciate it.
Fundraisers… Arlene’s
F amily and friends to support your events, ask 2019 Diary
local companies for help.
Dates of
U nder 16s cannot be solely responsible for money.
Interest
N eed a licence? Drinks/lottery? TSSS Conference Planning Meeting
7th September 2019 • Balsall Common
o a risk assessment – food hygiene, child safety,
D fire hazards. ESPE
19th-21st September 2019 in Vienna –
R aise funds in aid of TSSS.
I am speaking about the ENDO
dvertise your event, seek sponsorship – use European Reference Networks (ERN)
A local papers, social media.
Oxford Seminar Day
nsurance – damage, personal liability, avoid
I bouncy castles.
2nd November 2019 • Oxford
tart simple – small or large events, every penny BES
S counts! 11th-13th November 2019 • Brighton
nvironment – clear rubbish, biodegradable
E balloons, reduce plastic.
BSPED
27th-29th November 2019• Cardiff
R aining? Have an alternative plan! TSSS Office closed for
ecurity – on the door, is money always being Christmas Break
S watched? 19th Dec 2019 to 6th January 2020
Volume 6 • Issue 18 • Summer 2019 13TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:10 Page 14
Twenty for 20 Appeal
The TSSS UK is proud to be the host of the Turner £20 may not seem that much, however if you think
Syndrome International Conference (TSI2020) in about it, if:
2020. This is our chance to showcase what we do,
10 People raise £20 that’s £200
to bring together girls, women, families and
specialists from across the world, to learn together, 50 People raise £20 that’s £1000
socialise together and celebrate together. 100 People raise £20 that’s £2000
We would like
to ask for your Turner Our teens already have a Smarteens Appeal, which is
collecting 20p coins in Smarties Tubes, they were
help please, to Syndrome amazing last year, and the Smarteens Appeal is
make this an International already underway this year.
amazing event.
Conference Smarteens can be done by anyone, but you can also
2020
Where we can
think of it that £20 can be made up as follows:
really showcase
to the world, who we are, what we do and of course 100 x 20p coins
our wonderful members and regular professional 40 x 50p coins
supporters. 20 x £1 coins
We are asking if you can please help us by raising at Arlene has created a Just Giving Page specifically for
least £20 each, over the coming months, which will this appeal. Please help us by donating £20 on if you
help us to ensure that the TSI 2020 is one that will are able to support us follow this link.
be remembered for years to come. This conference https://www.justgiving.com/Arlene-Smyth1?
will raise much needed awareness and greater utm_source=Sharethis&utm_medium=fundraisingpage
understanding about the importance of early &utm_content=Arlene-Smyth1&utm_campaign=pfp-
diagnosis for all who have Turner Syndrome. email&utm_term=4yrV3E94K
We thank you so much for supporting us, we are a great society, we have wonderful members, and
you brighten each and every day.
ndrome and I am
I have Turner Sy n of the Aorta
Cardiac Alert Cards at risk of Dilatio
This increases my
risk of Aortic Diss
ection
Y
RI NG PREGNANC
Our Cardiac Alert Cards continue to be very popular, so much so that ESPECIALLY DU er Syndrome is asso
ciated with: • Enla
rged Ascending Aor
Valve
ta
This is because Turn • Bicuspid Aortic
we have had to print more cards. • High Blood Pressure • Coarctation of Aorta
that if I have:
We are able to do this thanks to the families who raised money for Heart by my Specialist Pain
I have been told den ons et Chest or Back
velop sud
• Collapsed • De of Breath
Awareness following the loss of their loved one. We are truly grateful to • Have shortness Scan
sider doing a CT
them. The Cardiac Alert Cards can be carried by any girl or woman with gor to A & E. Please con a Dissection of Aorta
Dial 999Tuorrne Synd rom
teley is
to adia
co nd ose
gnitio
• Enim me dia n ass M ed wit
of my Aorta lar ged AsE ceCA ingIO
ndRD LOGY ociat
TEA h:
TS to alert paramedics, doctors, nurses or indeed any other health care • High CALL TH Aorta
Blood Pressu
re • Coarcta
tion of Aorta
professionals about the possible heart complications seen in TS.
• Sudden on If this patient develops:
set of chest
pain • Shortn
Our thanks to the team at Oxford University Hospital especially Dr Helen Please cons
ider doing a
CT Scan of he
ess of Breath
to diagnose r Aorta imme
Turner. Dr Elizabeth Orchard and Emma Weingart for their dedication a Di
CALL THE CA ssection of Aorta
RDIOLOGY
diately
TEAM
to their patients in writing this card. We will be circulating them as
widely as possible at TSSS and HCP events throughout the country.
Turner Syn drome Suppor
Our thanks to www.tss.org t Society (UK
Dr E Orchard, .uk REG ENG )
Consultant Car 1080507/SCO
of Oxford Uni diologist and 37932
versity Hospita Dr H Turner, Con
ls NHS Founda sultant
tion Trust for
origination of Endocrinologist
this card.
Should you wish a free cardiac alert card,
please send a SAE to the TSSS office and we will
post one out to you.
I am delighted to share with you that we already
know that carrying this card has saved a life. So
please request one to carry with you.
Dr Helen Turner’s session at last year’s
conference holding up the Cardiac Alert and
OxTuSS card.
14 AspecTS MagazineTSSS Newsletter – July19.qxp_Layout 1 26/07/2019 12:24 Page 15
Condolences…
Our sincere condolences to Esther Rainey on the loss of her beloved husband, Jim Rainey.
Know that we are thinking you at this difficult time. Jim, was a dear friend to the society. We enjoyed
meeting with him and Esther on every trip we had in Northern Ireland and they visited our office on a
yearly basis. We became friends following the loss of their beloved daughter Sharon. We will miss Jim
dearly and thank Esther for her continuous support.
Our sincere condolences to Nigel Smith on the loss of his beloved wife, Janice.
Know that we are thinking of you and your family.
Janice Smith
It is with great regret that I life. She developed a
have to report the death of my passion for Persian Cats,
beloved wife, Janice, at 72 initially breeding several
years after 33 years of champion cats and then
marriage. qualifying as an
Janice was born in January international judge carrying
1947, before the advent of the out assignments as far apart
NHS and in the midst of one of as Budapest, the Channel
the worst winters on record. islands and across the UK. After
Weighing in at just over 3 our marriage in 1986 she took
pounds she spent the first the travel opportunities my job
always managed to bounce
weeks of life in Great Ormond offered to accompany me on
back, until last week when a
Street Hospital. Her condition trips to Hong Kong, Singapore,
bout of pneumonia proved to
went undiagnosed but she had South Africa, the Caribbean,
be one too many.
a relatively normal childhood. Malta and numerous European
Always smaller than her two destinations, often flying out Janice never minded being
younger siblings, she developed teased about her height, what
solo to meet me at or near the
without special attention or she hated was condescension,
end of my task. Unfortunately,
once when fully gowned and
medication into a strong willed her until then unnoticed
bejewelled at a Ford Motor
and vibrant young woman. She congenital heart defects,
company do the head of Ford
recalls being Diagnosed with coupled with a bout of viral
Europe patted her on her neatly
Turners at 15 without much pericarditis damaged her heart coiffured head, she nearly tore
distress although her mother and forced her to give up work. his arm off, if she could have
wrongly blamed herself ever A slower pace of life followed reached his throat the history of
after. but still interspersed with trips Ford in the UK may well have
She eventually attained the abroad for gentle holidays in been different.
height of 4ft 9" and a bit, the the Caribbean and the Islands
I remember the first time she
bit was very important. Taking of the Indian Ocean. In 2016
attended a TSS annual meeting,
what life offered by the scruff things caught up with her again typically she didn't want me to
of the neck, she developed a and she underwent major open attend and went alone. She
love of travel. In the 1970s she heart surgery, Aortic and Mitral came home on a huge high
boarded a bus on her own and valve replacement, an Aortic having met people like her for
travelled across Europe to root graft to remove a scary the first time, subsequently
communist Poland, followed by aneurism and a pericardial strip managing to get referred to
solo trips to Australia and to remove the damage caused Gerry Conway’s clinic with
Canada. Working for Unilever, by the virus. A hospital beneficial results for her overall
followed by the Ministry of acquired Ecoli chest infection wellbeing.
Agriculture, the Ford Motor saw her in ITU for 12 weeks but Best of all she was my wife and
Company and FDR, a credit she pulled through and friend for 33 years.
card processing company, she returned home. A number of
financed herself throughout her hospital stays followed but she Nigel Smith
Volume 6 • Issue 18 • Summer 2019 15TSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:10 Page 16
Donations List
January Lee Westgarth has sent us a £50
donation.
May
Our thanks to Katherine Nikki Reeves completed the
Mr R Harris sponsored his
Hammond who donated her hair Right Move MK Marathon on 6th
granddaughter to attend a spin
to the Princess Trust to make a May 2019. She has raised £665
class and they donated £50 to
wig and raised £288.75 for the including Gift Aid for our society.
our society.
TSSS. Thank you so much for
generosity it is much Dover Grammar School for girls June
appreciated. hosted a carnival games event at
Lisa Connaughton-Quinn went
the school to raise money and
for a wander up Ben Nevis on
awareness for the society. They
22nd June 2019 for our society.
raised £27.34 for us.
She has raised £969.18 including
gift aid for our society.
April
We have received an anonymous We have received an £150
donation of £5000 to our donation in memory of Julie
society. We have received this Winstanley’s late Mother.Our
donation to help us to continue condolences to all the family. We
to support girls and woman with are so sorry for your loss.
TS and their families. Congratulations to Rebecca, her
We have received a £600 Mum, Louise and family and
donation from the Ye Cronies friends for supporting them on
Club who kindly give us a their Kilt Walk, the final total for
donation every year. their charity which was Turner
Syndrome Support Society UK!
We have received a kind They managed to raise an
donation from E Jane Allen of amazing £988.40!!! Rebecca said:
£125 to our society. We received “I would like to thank everyone
the donation as a way of thanks (Family & Friends) who kindly
to her friend Linda Brown after donated to help support the
Jane suffered an accident when TSSS raising awareness of Turner
she was doing the Pembrokeshire syndrome! Still can't believe how
Coast Path walk and Linda has much we manage to raise! Thank
March been very supportive during the you again! XO”
We received a donation of £32 past nine weeks. Thank you
from the Clinical Systems Team Ladies!
of Pennine Care HS FT after they Arlene held a Partylite charity
held a dress-down day at their afternoon tea a few months ago.
office on behalf of one of our With all the games, raffles and
members, Freya Taylor. orders that were placed that
We have received a donation afternoon we raised £250 for the
from Victoria Law who held a society. Thank to our lovely
dress-down day at her work. Partylite host John Devaney as
They managed to raise £112 for well.
the society. We have received an £1200
One of our members has been donation in memory of the late
selling our TSSS goodies in her Mr Edward Gibson. He was the
local area and has raised £140 for beloved husband, father and
the society so far. grandfather of the Burrows
We received a £12.50 donation family. We are so sorry for your
from Jess Impey for her niece. loss.
We have received a £25 donation We have received a £1000
in memory of the late Vivien donation from the Rainey family
Waters. to help support our society.
16 AspecTS MagazineTSSS Newsletter – July19.qxp_Layout 1 25/07/2019 18:11 Page 17
Easyfundraising
& Amazon Smile
Thanks to our amazing supporters shopping online with Easy Fundraising,
on average we receive £30 plus per month. In June it was £60.79 it all
helps.
Don’t forget to use Easy Fundraising for all your online shopping, we now
have 293 supporters which is a further increase, just wonderful, thank you
to each and every one of you. With your help and by asking friends and
families to support the TSSS without spending a penny we could easily get
that number increased.
Your support really does make a difference, please register and support us
https://www.easyfundraising.org.uk/causes/tsss.
I We are also signed up to Amazon Smile, choose us when shopping and we
get donations.
I am delighted to share with you that Amazon has donated £40.79 to the
TSSS as a result of Amazon Smile programme activity between 31st January
and 31 March 2019.
Facebook Don't forget you can support us by going to smile.amazon.co.uk,
Donations https://smile.amazon.co.uk/ch/1080507-0, and select Turner Syndrome
Support Society UK. Thank you in advance for your support.
We are so pleased with the
You can also now donate through Facebook. Many members are asking for
response we have received
a donation to the TSSS instead of birthday gifts, so generous and makes a
with your donations through real difference. Thank you to everyone who has made a donation to us
our Facebook page. We are already. Since we started in May 2018 we have raised £4904.33, an amazing
so grateful to everyone that total, we just can’t thank you enough. The payments go straight into our
decided to request donations bank account. This is an amazing way for you to show your support and
for our society in lieu of raise awareness at the same time. Please do keep it up!
birthday presents over the
past few months.
Thank you all so much for
Great Weather Lottery
your continued support Please have a look at our fundraising wheel on the
TSSS website – https://tss.org.uk/about/fundraising.
We are so pleased to say We have been set a challenge to get new people
that the amount that has playing The Weather Lottery. They have set up a
been raised so far is rewards system please help us if you can? We have
£4904.33. had a few winners recently.
Here is a list of everyone that There is new information on the Great Weather
has raised money so far: Lottery – visit our page
• Claire Garrod http://www.theweatherlottery.com/charitiesHomepagePlay.php?client=TURNE
• Beverley Stewart
Fundraising Standards Board has
• Emma Burton
been changed to the Fundraising
• Adam Read
Regulator, we have now completed
• Kimberley Roberts our registration.
• Poppy Dyer We are updating our fundraising guidelines at the moment please look at the
• Lesley Ann Brian website for more information. It makes sense with the new GDPR laws now
• Paulina Szulic in force to update all our policies at the same time. We can assure you that
your data has always been treated with the strictest confidence and we will
• Ella Phillips
continue to do so. We would never sell data or use the services of a
Please forgive us for company to do direct marketing to our members. Small charities have a
anybody that we have much more personal relationship with our supporters. The TSSS could not
inadvertently missed from help and support others without your kind donations and fundraising, we are
these lists. so grateful to each and every one of you. Thank you from the bottom of our
hearts. You are all amazing!
Volume 6 • Issue 18 • Summer 2019 17You can also read
