TSA Support Line pilot launches - The Tuberous Sclerosis ...
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APRIL 2020 The magazine of the TSA
TSA Support Line pilot launches
TSA events Meet your new
for 2020 Support Line Advisers
2020 clinic
lead meeting Stop press:
Coronavirus
and TSC
Registered charity 1039549 (England & Wales) Registered charity SC042780 (Scotland)
CONTENTS
15-17
8-9
12-14
A N IN-D EP T H L O O K A T T H E
M EET T H E S U PPOR T
S ER V IC ES T EA M
Say ‘Hello’ to the Support and
Information team, including your
NEW T S A S U P P O R T L INE new friendly Support Line Advisers,
The TSA support line pilot is underway Anna and Mega, who tell us a little
TS A E V E N TS F O R THE Y E AR – here, we take a deeper look at the bit about themselves and why they
A run-down of all of the great TSA events we TSA’s new support service are so passionate about supporting
have for you in 2020! the TSC community
03 10 24/25
EDI TO R’S F O REWO R D AN D O U TLO O K 2 0 2 0 : W E’ R E G O ING F U ND R A IS ING T H A NK Y OUS
CO NTACT DETA I LS TO D U R H A M ! We celebrate some of our amazing
An overview of what to expect from your A look at what we have planned for fundraisers from the end of 2019 and the
Spring 2020 edition of Scan Outlook 2020, taking place this year in beginning of 2020
Durham (note: date currently postponed)
04 15-17 26
C O R P O R A T E F U ND R A IS ING
A WO RD F RO M YO U R ME E T T H E S U P P O R T We thank individuals and groups
CH I EF EXECUTIVE S E R V I C ES T EA M involved in corporate fundraising for
Get to know the TSA’s Support and the TSA, including Equistone Partners
Louise goes through the TSA’s priorities
Information team including our Support Europe who have nominated us as their
as we work hard for the TSC community
Line Advisers, Mega and Anna, who are Charity of the Year!
amidst the coronavirus outbreak
dedicated to helping the TSC community
21 27
05
A WO RD F RO M YO U R CHAI R F U N D R A IS ING C H A M P IO NS
IND O O R F U ND R A IS ING
Spending less time outdoors shouldn’t
The fantastic Derby Sax Quartet show stop you from raising money for people
Sanjay discusses the importance of
us how you can turn your passion into affected by TSC - here are just some of
increasing the reach of the TSA and how
a way to improve the lives of people the ways that you can fundraise from
you can help
affected by TSC! your home!
06/07 22
ME E T O U R L O ND O N
Back cover
INC R EA S ING O U R R EA C H
LATEST TSC NEWS MAR AT H O N T EA M Get on-board with Sanjay’s push to
The latest TSC updates from around Meet our incredible London Marathon 2020 increase the TSA’s reach, allowing us
the UK, including the TSA joining the runners, taking to the pavement to raise to have a bigger voice in improving the
Embracing Complexity Coalition funds for people affected by TSC lives of people affected by TSC
2 | APRIL 2020
Head office Fundraising
The Tuberous Sclerosis Association, Mikaela Conlin-Hulme (Head of Income Generation)
1 Emma Street, London, E2 9FP Kathryn Harrison (Community Fundraising Manager)
Mike Dodson (Office Manager) fundraising@tuberous-sclerosis.org
0300 222 5737
admin@tuberous-sclerosis.org Research
Pooja Takhar (Head of Research)
Communications and Events Bethan Vaughan (Research and Evidence Officer)
Luke Langlands (Head of Communications and Engagement) research@tuberous-sclerosis.org
Charlotte Strain (Events and Communications Assistant)
comms@tuberous-sclerosis.org
From the Editor
We have a packed Scan for this issue, with the
pages bursting at the seams with updates from
the TSA on everything we have been busy doing
in the first steps of a new decade.
LUKE LANGLANDS, EDITOR
You will see that much of this issue of Scan focuses on the launch
Support and of our upcoming support line, which is currently undergoing its
Information pilot stage. We have provided an in-depth look at the support line,
including what it exactly is and how you can access it. There are also
Rachael Wyartt welcome messages from our brilliant new Support Line Advisers,
(Head of Support and Information) Anna and Mega!
Julie Rainer
(Information Officer) This issue of Scan went to print just as the worldwide coronavirus
Anna Gaunt outbreak began to truly take hold of everyday life in the UK. In their
(Support Line Adviser) forewords, Louise and Sanjay discuss our priorities as the virus
Mega Arumugam spreads. You will also find special pop-out boxes throughout this
(Support Line Adviser) issue, which give updates in reaction to coronavirus and our work for
the TSC community.
The TSA is currently piloting its There’s still time to get involved in our 2020 fundraising challenge,
new support line. To access our which involves making a personal pledge to raise a set amount for the
support and information services, TSA across 2020. If you’re now spending more time indoors due to
please either freephone (0808 coronavirus, you’ll find tips on indoor fundraising on page 27.
801 0700), email (support@
tuberous-sclerosis.org) or We’ve also been hard at work giving the TSA’s social media and email
write (‘TSA, Unit 56, 1 Emma newsletters a bit of a spring clean. However, we are always on the
Street, London E2 9FP ‘ / or lookout for people to collaborate with us, so get in touch if you’re
‘Freepost TSA’) happy to share your story or to help in any way!
We hope you enjoy this issue of Scan. In the meantime, do let us
know if you’d like to be involved: comms@tuberous-sclerosis.org.
All the best,
Luke Langlands, Editor
Profile images courtesy of Mike Dodson /
Vagabond Images
SCAN | 3
FOREWORDS
A word from your
Chief Executive
OUR PRIORITIES AS WE FACE THE CORONAVIRUS OUTBREAK AND TSC
As Scan goes to print on 20 March 2020, we’re just beginning to
understand the impact that the coronavirus pandemic will have
on everyone living in the UK over the coming weeks and months.
Our first priority has been to develop information about coronavirus and TSC for
you, based on advice from some of the excellent clinicians working in TSC clinics
across the UK. This includes the coronavirus pullout enclosed with today’s Scan and
we will update our website regularly whenever new evidence becomes available at
www.tuberous-sclerosis.org/covid19.
Another priority is to provide ongoing support for the amazing TSC community
during the coronavirus pandemic. During this period of uncertainty, some of you
may have lots of questions, some of you may find TSC-associated anxiety gets worse,
and some of you may feel lonely if you’ve been asked to work from home or self- LOUISE FISH, CHIEF EXECUTIVE
isolate. We’re here to help! We are already answering your questions through our
support line and website, sharing tips and ideas on reducing anxiety and stress, and developing plans on keeping you all
in touch with each other as we begin to spend more time at home.
A third priority is to review the amazing community events and fundraising events (see pages 8 and 22) that we have
planned for 2020. Your wellbeing is at the heart of everything that we do and we will follow UK Government advice by
postponing events when we’re asked to do so to keep everyone safe and healthy. We appreciate that this may cause
some disruption and disappointment, and we’ll share any changes as soon as possible.
Our final priority is to ask for your help: Our fantastic fundraisers generate almost 70 percent of the TSA’s income each
year by taking part in group activities like runs, coffee mornings and charity nights. All of these regular fundraising
activities are currently on hold as a result of social distancing, so we’ve come up with a creative list of just some of the
ways to raise money while you’re at home, on page 27!
We’ll do everything we can to help you, your family and friends stay safe and well, including over the coming months.
With my best wishes,
Louise
Louise.Fish@tuberous-sclerosis.org
Coronavirus and TSC: Information for the TSC community
We understand that some in the TSC community may have questions or could be feeling anxious
about the coronavirus outbreak. The TSA has spoken with doctors in TSC clinics from across the
UK and will maintain up-to-date information on our website about the situation, in-line with UK
Government advice.
Those who have questions or concerns about coronavirus should speak to their healthcare professionals for
individual advice, or contact the TSA support line (see page 13 for contact details). Information about coronavirus
and TSC will continue to be updated on our website: tuberous-sclerosis.org/covid19.
4 | APRIL 2020
FOREWORDS
A word from your
Chair
LET’S WORK TOGETHER TO RAISE THE TSA’S PROFILE
By getting more people signed up to the charity, we can do more
for the TSC community
With four years remaining of the TSA’s ambitious five-year strategy for 2019-2023, we
continue working hard to REACH more people and drive more REseArCH.
When I was introduced as TSA Chair at the 2019 AGM and Big Day, one of the
points I emphasised was how each one of us can help deliver the charity’s goal to
reach more people. This will raise awareness of the work that we do and – most
importantly – raise awareness of TSC.
Currently, we have just over 6,000 people on our contact list - that’s 6,000 people who
we contact regularly about TSC research, events, campaigns and fundraising.
Our mission is to reach a lot more individuals with TSC, their families and others SANJAY SETHI, CHAIR
that support them – whether it is friends, neighbours, teachers or colleagues. We
therefore call on you, our community, to help us extend this network by asking those that support you in your daily lives to
sign up to receive regular news and updates from the TSA.
I know from personal experience that when your child is diagnosed with TSC it can feel incredibly isolating. No-one can
truly say they understand, unless they have walked in your shoes. But it’s worthwhile to reach out to those who want to
help but don’t know how by putting them in touch with the TSA.
By growing our REACH, we also increase the chances of those working for the NHS and in UK Government listening to the
needs of people affected by TSC. I want the TSA to have the same potential as other groups who have a larger reach when
lobbying pharmaceutical companies, the National Institute for Health and Care Excellence (NICE, who help guide NHS
England) and the Scottish Medicines Consortium (SMC).
For example, it is estimated that between 3,700 and 11,000 people across the UK are affected by TSC. That’s a similar
number to those with cystic fibrosis (CF), but 90,000 people are signed up to hear about CF – 15 times more as many
people as we have! I want to raise the profile of TSC to ensure we maximise our potential to represent and fight for the
needs of our community. TSC needs to find its way into everyone’s vocabulary, just like CF.
The more people we can reach whose lives are touched by someone with TSC, the more we can do to help individuals and families
who are directly affected by the condition.
If everyone can persuade a few people to sign up, we can double or treble our list of contacts in no time. Please, ask
those close to you to sign up by visiting www.tuberous-sclerosis.org/iwanttohelp. Also, don’t forget to follow us on
Facebook (facebook.com/thetsauk) and Twitter (@UKTSA) too. It all counts.
Extending our REACH is even more important today, when the coronavirus pandemic is driving self-isolation for some
people and social distancing for everyone. Many of our key community and fundraising events are likely to be postponed
or cancelled in the near future, putting an unexpected strain on the TSA’s already limited resources. At this time, growing
our support network is critical to the TSA’s future.
Sanjay
Chair@tuberous-sclerosis.org
SCAN | 5
NEWS
News
NEWS AND UPDATES FROM AROUND THE UK
WaterSure Scheme
Have you heard of the WaterSure
Scheme? If you live in England or
Wales and are on certain benefits or
use a lot of water due to a medical
condition, the WaterSure Scheme can help you
with your water bills. To see if you qualify, visit the
Citizens Advice website: https://bit.ly/32pDTbX.
Campaigners demand more accessible
toilets in hospitals
Disability campaigners, including Disability
Rights UK, are calling for every NHS
England ward to be equipped with a fully
accessible disabled toilet. The call comes
following a government announcement of £500,000
funding to install Changing Places facilities at acute
hospitals in England. However, the cash boost will
Family Fund Information Days only lead to 16 additional toilets, at 10 NHS trusts.
Family Fund, a charity that provides
financial assistance to families of children
with disabled or ill children, are hosting
a range of information and support days
across the UK. You can go along to learn more about
support services and grants you might be eligible for,
as well as gathering further information on things
that might help you and your child. More information
can be found at www.familyfund.org.uk.
TSA joins the Embracing Complexity
Coalition
A fond farewell to Tanya Darnton The TSA has announced that it has
After seven years of hard work and dedication, joined the Embracing Complexity
the TSA said a heartfelt thank you and goodbye coalition, a group formed of leading UK
to Tanya Darnton (Fundraising Manager) in neurodevelopmental and mental health
early January. Our loss is certainly another condition (NDC) charities.
charity’s gain, with Tanya moving on to an important role The aim of the coalition is to help organisations
with a local charity in Winchester that supports people supporting people living with NDCs, like TSC, to
living with learning disabilities. achieve the best outcomes that they can for their
In Tanya’s own words: “It has been a privilege to work with communities. The TSA will be pushing to ensure that
all of the TSA team and the community over the years. I will be the priorities of people affected by TSC are promoted
sad to leave the TSA, but I am also looking forward to a new within the organisation. Other charities that are part
challenge.” of Embracing Complexity include Epilepsy Research
UK, Mencap and Autistica.
Everyone at the TSA wishes Tanya well for the future!
6 | APRIL 2020
NEWS
Woman uses own knowledge of law to fight for autistic son’s education rights
A mother in Wales shared her story of having to use her own legal training to secure an appropriate teaching
environment for her son. Kate McMurdo struggled to find a suitable school for her son, who lives with autism,
and was forced to fight for his rights through her own legal knowledge. Kate used her legal skills in a meeting with
Swansea Council to secure funding for a place at an independent school for her son.
National Autistic Society Northern Ireland Barclays teams up with Scottish Autism to
opens first of its kind Autism Centre make Glasgow offices more accessible for
people living with autism
National Autistic Society Northern Ireland
has opened a new state-of-the-art day Scottish Autism, Scotland’s largest
centre for autistic adults in Carryduff, provider of autism-specific services, is
County Down. Features of the new helping Barclay’s make their flagship
centre include colourful multi-sensory rooms and Glasgow offices more autism-friendly. The
a fitted kitchen to practice life skills. The centre is two-year project involves the charity giving Barclay’s
described as a relaxed environment, in which adults advice on the design of its premises in the city, at
who live with autism can will learn to become more which it plans to create 2,500 jobs. Scottish Autism is
independent. helping in a wide range of areas, including the design
of flooring and suggesting what building materials
are autism-friendly.
Arts Council of Wales launches Hynt, an arts venue accessibility website
Arts Council of Wales has launched Hynt, a new national access scheme that works with theatres and art
centres in Wales to make sure that any visitors with an impairment or specific access requirement find venues
and performances accessible. The website allows users to search for accessible venues across Wales, as well
as also listing autism-friendly events.
Mother of daughter with complex disabilities sets up support group
A mother in Greenock is working with local community project One Place Our Future to organise a new
support and friendship group for families affected by complex physical and mental disabilities. Kirsteen
Begley founded the group, named ‘Growing Pains’, after finding that “there was very little support out there
for children who had wide-ranging disabilities”. Growing Pains meets every Monday from 12:15pm in the
Inverclyde Community Hub, 75-81 Cathcart Street, Greenock (call 01475 711 733 for more information).
SCAN | 7
EVENTS
TSA events
calendar 2020
Stop press: Outlook 2020 and Family Fun Day at Acorn Farm postponed
We know how important it is for the TSC community to come together, which is why we’ve put a lot of time
into planning a fantastic events calendar for 2020. However, following UK Government recommendations
regarding coronavirus, we have taken the tough decision to postpone Outlook and the next Family Fun Day.
E V Postponing
ENTS these events was not a decision taken lightly and we know that many will be disappointed, with our events
calendar being vital to connecting the TSC community. However, the health of the TSC community comes first and we
must follow UK Government advice regarding events and gatherings of people.
Further updates on Outlook and the Family Fun Day at Acorn Farm will be shared as soon as we are able to do so.
Dates for all other TSA events for 2020 remain unchanged.
WE’VE GOT A FANTASTIC RANGE OF COMMUNITY EVENTS IN 2020, ALL HAPPENING
ACROSS DIFFERENT NATIONS AND REGIONS IN THE UK. BE SURE TO GET THEM IN YOUR
CALENDAR SO YOU CAN COME ALONG!
This year, we have also extended the number of Family Fun Days that we will be hosting to three, following very high
demand for our Family Fun Day at Chester Zoo in 2019!
We’ll be sharing further information about TSA events on our website, social media and email newsletters, as well as in
Scan. Make sure you’re following us or signed-up to our different platforms, to not miss an announcement.
FAMILY FUN DAY
The Family Fun Day is the perfect opportunity for families affected by TSC to get together for a great day
out. You’ll be able to connect with other families who understand how TSC can affect lives, in a relaxed and
easy-going atmosphere where the kids can enjoy themselves. So, come along and get a warm welcome!
14 POST- 15
MAR PONED AUG
Blue Reef Aquarium Acorn Farm (Kirkby, Birmingham Botanical
(Portsmouth) Merseyside) Garden
The fun began on 14 March, with Acorn Farm is a family-friendly One of the Midlands’ best
the TSA heading to Blue Reef and award-winning day out, where attractions, Birmingham Botanical
Aquarium in Portsmouth! There families get up-close to feed and Gardens offers something for
were loads of things to explore pet animals at the farm. Not keen all! From their glasshouses and
at the aquarium, with different on animals? Don’t worry! The playgrounds to their tearoom
creatures from the sea and even walks, playground and sensory and beautiful walks, your family
some land-based animals like garden make Acorn Farm a great is in for a treat whatever the
otters and lizards! family attraction for everyone. weather.
8 | APRIL 2020
EVENTS
Outlook 2020 (Radisson Blu, Durham)
Are you an adult mildly affected by TSC? Come along to Outlook to make new POST-
and meet old friends, share experiences about TSC and attend interesting PONED
workshops and talks.
We have a fantastic day planned for Outlookers this year, organised alongside a great team of
Outlookers themselves! You can look forward to a meet and greet with the TSA’s Support and Information team, a
session on Emotional Freedom Technique and much more!
6 25
JUN JUL
Welsh Info Day (Future Inns, Cardiff) Scottish Get Together
(Volunteer Scotland offices, Stirling)
The Welsh Info Day brings together Wales-based TSC
community members – including people living with Do you live in Scotland and you or someone close
the condition and their family – to connect with each to you is affected by TSC? Then the Scottish Get
other, whilst taking part in a range of informative Together is for you! Come along to focus on life in
presentations and interactive sessions, all focused on Scotland when living with the day-to-day impact of
key topics around TSC and living in Wales. TSC, with opportunities to get to know each other and
hear from different speakers from the TSA and other
groups that support people affected by TSC.
14 14
NOV NOV
TSA Annual General Meeting Community Research Education Afternoon
(Royal College of Physicians) (Royal College of Physicians)
This year, the TSA’s Annual General Meeting will take The TSA is proudly hosting the International TSC
place at the Royal College of Physicians immediately Research Conference 2020. As part of this, we warmly
before the Community Research Education Afternoon. invite the community to join us for the Community
All community members are welcome to come along, Research Education Afternoon, an opportunity to learn
to hear from our Trustees and about our work to hit about the latest breakthroughs and findings in TSC
objectives in our five-year plan for 2019 – 2023. research from world-leading academics and clinicians.
The TSA is working with the Belfast TSC clinic to confirm a date for our Northern Ireland event, with a further
announcement to be made as soon as possible.
Interested in coming to a TSA event, but worried about the cost?
You might be eligible for the TSA Support Fund. Our support fund can be used to help with affording things when
money is tight, including events and other activities, as we believe that financial difficulties should not be a barrier
to connecting with your fellow TSC community.
To apply for the TSA Support Fund or for more information, please contact Rachael Wyartt (Head of Support and
Information Services): Rachael.Wyartt@tuberous-sclerosis.org / 0300 222 5737.
SCAN | 9
EVENTS
Don’t miss Outlook
in 2020
Outlook 2020 postponed
As a result of the ongoing coronavirus pandemic, Outlook 2020 has been postponed until further notice.
More information on when the event will now take place will be shared later in the year.
OUTLOOK IS OUR LONG-STANDING EVENT FOR ADULTS MILDLY AFFECTED BY TSC,
TAKING PLACE THIS YEAR AT THE RADISSON BLU HOTEL, DURHAM.
All adults mildly affected by TSC are invited to come along to Outlook, to make the most of the chance to be in an
environment that understands the impact that TSC can have on the lives of adults mildly affected by the condition.
This year, we hope to welcome more Scottish-based community members
than previously. Durham is accessible from Edinburgh, Scottish Borders and
Midlothian - let us know if you are coming from Scotland and we can see if
anyone else is travelling at the same time!
What to expect if you come to Outlook 2020
This year, Outlook is being proudly co-organised by the TSA and a team of long-standing Outlookers. Highlights of
Outlook 2020 will include a session on Emotional Freedom Technique (EFT). Also referred to as ‘tapping’ or ‘psychological
acupressure’, EFT is an alternative treatment for physical pain and emotional distress. There will also be the chance to get
to know the TSA’s new support line advisers and to learn more about how the support line works, as well as opportunities
to catch up with fellow Outlookers.
Although Outlook can sound like a busy day, attendees are encouraged to go at their own pace and to do what feels best
for them!
ANNA, KATIE AND ANDY AT OUTLOOK 2019! LAST YEAR’S OUTLOOKERS
10 | APRIL 2020EVENTS
Come along to the
Family Fun Day at
Acorn Farm
Family Fun Day Acorn Farm postponed
As a result of the ongoing coronavirus pandemic, our visit to Acorn Farm has been postponed until
further notice.
More information on when the event will now take place will be shared later in the year.
THE TSA WILL WELCOME FAMILIES AFFECTED BY TSC TO ACORN FARM IN KIRKBY,
MERSEYSIDE, FOR OUR SECOND FAMILY FUN DAY OF THE YEAR!
Acorn Farm, situated outside of Liverpool,
is an award-winning day out for the whole
family. At the working farm, you can get up-
close with many different friendly animals,
including those from the farmyard, smaller
animals and even ones more exotic, like
meerkats!
If animals aren’t really your family’s thing,
the play areas, sensory garden, or beautiful woodland walks are sure to be a hit.
There’s also a farm shop which sells homemade produce, including ice cream!
Rare Disease Day 2020
ON 29 FEBRUARY, WE CELEBRATED RARE DISEASE DAY, A VITAL OPPORTUNITY TO RAISE
AWARENESS AMONGST THE PUBLIC AND DECISION-MAKERS ABOUT RARE DISEASES AND
THEIR IMPACT ON THE 1 IN 20 PEOPLE WHO LIVE WITH THEM.
Rare Disease Day 2020 was the 13th Rare Disease Day. This year’s
theme was ‘Rare is many, rare is strong, rare is proud’. To mark the day,
we celebrated the amazing resilience, passion and bravery of parents
in the TSC community, who work tirelessly to improve the lives of their
children who live with TSC.
Bobbie Tyler, a parent in the TSC community, took the time to tell us
about her experiences of being Mum to her daughter Jennifer, who
lives with TSC. You can read Bobbie’s piece on our website:
bit.ly/2xaGueo.
We also encouraged you to get involved by sharing your special Rare Disease Day painted hand pictures – with the TSA
team getting involved too!
SCAN | 11FEATURE
New TSA support line
launched
An in-depth look at your new service
A PILOT OF THE UPCOMING TSA SUPPORT LINE HAS COMMENCED, IN ANTICIPATION
OF THE SERVICE’S FULL LAUNCH. ANY COMMUNITY MEMBER CONTACTING THE TSA’S
SUPPORT SERVICES BETWEEN NOW AND THE SUPPORT LINE’S FULL LAUNCH WILL
ACCESS THE SERVICE’S PILOT SCHEME.
But, what is the TSA support line and how can people use it? Here, we take an in-depth look at the new service and what
you can expect.
What exactly is the TSA support line?
The TSA support line will be the main way that the TSC community can speak to us for support and information.
The support line is run by our Support and Information team. Some members of the team are new and some have been
with the TSA for some time, with everyone bringing a wealth of professional backgrounds, skills and expertise that can
benefit the TSC community.
When accessing the support line, you can expect:
Free and confidential support on any TSC topic
Friendly, warm and professional TSA advisers available 9am – 5pm, Monday to Friday
A small, dedicated and home-based team that serves only the TSA community
Signposting to specialist and local services when additional expert support is needed
A team who are trained and knowledgeable about the impact of living with TSC across all four UK nations –
England, Scotland, Wales and Northern Ireland
You can speak to the TSA’s small team of advisers about any TSC-related topic, such as taking your first steps following a
recent diagnosis, accessing emotional support during a tough period, or securing a referral from your GP to an NHS TSC
clinic.
The advisers that you will speak to on the support line focus exclusively on helping the TSC community across England,
Scotland, Wales and Northern Ireland.
No matter where you live in the UK, the support line will offer you the same level of service. This includes every UK nation,
with our Support and Information team understanding the significant differences in health and social care across England,
Scotland, Wales and Northern Ireland.
The Support and Information team will be hard at work not only on the support line, but also in helping to improve
resources on our website and other ways that we communicate, as well as also working closely with TSC clinics to ensure
that the TSA’s links with clinics continue to be strong.
12 | APRIL 2020FEATURE
The TSA support line and coronavirus
The TSA’s support line is here for you during any TSC-related issue, including any concerns regarding
TSC and coronavirus.
How can I contact the support line?
You can contact our support line through:
Telephone: 0808 801 0700 (freephone)
Email: support@tuberous-sclerosis.org
Post: TSA, Unit 56, 1 Emma Street, London E2 9FP (or send to ‘Freepost TSA’)
Web chat support is also planned following the service’s launch, allowing users to chat directly with the support line team
via our website.
When you contact us, one of our support line advisers will be there to assist you with your enquiry, using their expert
knowledge and resources, which are regularly updated and refreshed by our Information Officer.
A translation service for over 200 languages is being put in place for the support line through an external provider,
allowing us to support those for whom English is not their first language. This service will be in place by the time the
service formally launches.
How long will it take to get a response?
If you get in touch by telephone – Your call should be answered straight away
If you get in touch by email – You can expect a reply within a maximum of three working days
If you get in touch by post – You can expect a reply within a maximum of three working days of us receiving your letter
TSA support line
business card
Cut out this TSA card and keep it handy, such
as in your wallet or purse, so you always have
our support line details on-hand:
SCAN | 13FEATURE
As the Support and Information team live in England, is it a service for people in England only?
No. The TSA is committed to providing information and support to all members of the TSC community throughout
England, Scotland, Wales and Northern Ireland.
The Information and Support team understands that the health and social care settings of all UK nations can be very
different, as well as every UK nation having its own unique challenges and opportunities in living with the impact of
TSC every day. Our advisers will work with you on any TSC-related query regardless of your location in the UK.
Why is the TSA piloting the new support line?
The pilot has been shaped by feedback, concerns and ideas from the TSC community that we have received during TSA
events, online surveys and telephone focus groups. During this pilot period, the TSA is proactively seeking feedback from
service users, ahead of a formal launch for the new support line.
By piloting the support line, we hope that the final service can be more robust, reliable and useful to the TSC community.
Will I need to update support line advisers about my personal situation every
time I contact them?
With your permission, a personal and confidential record of your situation and any issues that you have contacted us
about will be logged, which will be accessible by the support line adviser team only. This means that when you contact us,
the support line adviser helping with your enquiry will already have some insight into your situation.
What you talk about with our support line advisers will be confidential*. You will be able to talk about any TSC-related
issues that you have with our support line advisers in a safe environment, such as questions about a recent diagnosis or
outreach for emotional support. Contact can also be anonymous, if you prefer.
How can I get support and information about local services?
The support line team has expertise in signposting local and regional services which operate throughout the UK, in large
part thanks to the excellent work of our long-running Information Officer, Julie Rainer. As well as this, the TSA is committed
to signposting local, regional or national services based on the needs of individuals.
The support line advisers will also have access to the Support Line Handbook, a ‘living’ TSA resource for the Support and
Information team on all TSC support issues. The handbook includes information on specialist services across the UK and
changes to the handbook will be reflected on other TSA materials, such as our website and leaflets.
How is the Support and Information team and support line funded?
As with everything else at the TSA, we can operate only thanks to the incredible generosity of individuals, groups and
organisations that take the kind step of providing us with donations or grants. It is only through fundraising that the TSA is
able to be here to offer support and information to our great community.
*Unless we are concerned about you and think you
may be at risk of harm. If this is the case, we may
have to tell a third party. However, we would always
talk to you before we did this.
14 | APRIL 2020FEATURE
Say ‘Hello’ to the
TSA’s Support and
Information team
FIND OUT MORE ABOUT THE PEOPLE WHO ARE BEHIND THE TSA SUPPORT LINE AND
OUR OTHER AREAS OF SUPPORT AND INFORMATION.
The Support and Information team is a mixture of those who are new to the TSA and others who have been with
the charity for a long time. We want to make sure that everyone in the community can get to know the people
offering their knowledge and expertise to you.
If you’re coming along to one of our community events in 2020, you will also have the opportunity to meet
members of the Support and Information team face-to-face.
Although some members of the team are newer than others, each member of the Support and Information team
has the same level of warmth, understanding and passion that is required to help the TSC community through
different hurdles in life.
Rachael Wyartt Julie Rainer
(Head of Support and Information Services) (Information Officer)
Rachael oversees all aspects of the Support and Julie joined the TSA over three years ago and is
Information team, including ensuring that our responsible for ensuring that all information that
support line delivers a meaningful, reliable and up- the TSA provides about TSC and support is clear,
to-date service to everyone that contacts us. Rachael accurate and up-to-date. Prior to joining the TSA,
lives in Suffolk. Julie had a number of educational and charity
roles, most recently working as an Information
Rachael joined the TSA one year ago, having
Officer with Carers’ Resource.
previously worked in many different charity and
healthcare roles. Most recently, Rachael was part Based in Yorkshire, Julie’s in-depth knowledge of
of the team at Helplines Partnership, a membership TSC and support services is invaluable and means
body for organisations focused on information that the information on our website, social media
and support provision. At the Helplines and publications (including Scan) is as effective as
Partnership, Rachael was in charge of ensuring that possible. On the support line, Julie has a key role
member groups offered support services of the in supplying information, in particular for regional
highest quality. and local services.
SCAN | 15FEATURE
Meet your new
support line advisers
ANNA AND MEGA, TSA SUPPORT LINE ADVISERS, ARE NEW TO THE CHARITY AND KEEN
TO INTRODUCE THEMSELVES TO THE COMMUNITY!
When you contact our support line, you will be likely assisted by either Anna or Mega. Anna and Mega have joined the TSA
with extensive experience in working with various support line organisations and have a passion for helping communities.
Anna Gaunt
(Support Line Adviser)
Hello to everyone in the TSC community!
I’m Anna and I’m a new Support Line Adviser at the TSA. I wanted to
share with you a little bit about me!
I have worked in a range of information roles and have also written
for various publications, all of them focused on disabilities, health or
wellbeing – my specialisms for many years. I have also been a support
line contact for another health charity for the past four years, which has
given me an insight into how best to support people living with complex
health conditions, like TSC. I am also part of a steering group for research
projects into healthcare, which has allowed me to contribute to ensuring
that the voices of people living with different conditions are heard.
I live with a chronic health condition myself and because of this I
understand the importance of being able to access timely and relevant
information and support, especially when times are difficult. My passion
and expertise for supporting people is why I wanted to join the TSA.
Outside of work, my hobbies include exploring the amazing countryside
near where I live in Derbyshire, enjoying a good book with a cup of tea
I understand the
(I’m a big bookworm!) and visiting cute animals at a nearby farm – I
especially love seeing the goats as I’m an animal lover. I even have a importance of
house rabbit called Freddie, who keeps me busy!
being able to access
I am very excited to be part of the TSA team and to be part of delivering
the charity’s objectives of providing help for today and a cure for timely and relevant
tomorrow. But, most importantly, I’m looking forward to supporting
people whose lives are affected by TSC and being a listening ear on
information and
the support line. I’m also excited to meet some of you at upcoming support, especially
TSA events.
when times are
Anna difficult.
16 | APRIL 2020FEATURE
Mega Arumugam
(Support Line Adviser)
Hello everyone! My name is Mega. As I start my journey with the TSA
and supporting the TSC community, I wanted to let you know a bit more
about me!
I have worked in the helpline sector for the last 14 years, starting out as a
volunteer with a local domestic and sexual abuse support charity based in
Leicester. There, I provided both practical and emotional support on their
helpline and eventually progressed into a managerial position, overseeing
the development and delivery of their helpline services.
As a trained support line advisor, I find it very empowering to be able
to offer support and, at the same time, provide holistic and practical
information to community members. Through a combination of active
listening and offering information, I can hopefully help people to
overcome or better deal with any TSC-related issues at hand.
I am also a qualified trainer, specialised in designing and delivering
a wide range of communication skills training to organisations within
the helplines sector. Organisations I have trained include health charities
such as Marie Curie, Alzheimer’s Research UK, Dementia
UK, Myleoma UK and the British Lung Foundation, as well as broader I find it very
support organisations such as Citizens Advice, NHS Foundation
Trusts, Healthwatch England and the Parliamentary and Health
empowering to
Services Ombudsman. Working with such a broad range of groups and be able to offer
organisations has provided me with a valuable insight into how health
and social sectors can have a positive impact on individuals and families. support and, at the
On a personal level, I am a mum of a little boy who has a rare medical same time, provide
condition. Although he is managing it well, there have been times
when, as a parent, I felt that I was lacking support – I was constantly holistic and practical
on the lookout for symptoms and side effects, feeling very alone, and
not knowing how to digest the knowledge of it all. These personal
information
experiences have allowed me to empathise with the needs and concerns to community
of people living with a rare condition, and those close to them.
members.
Outside of work, when I am not busy cleaning, home organising and
doing the children’s school and weekend club runs, I enjoy travelling and
visiting places around the Midlands with my family.
Mega
SCAN | 17RESEARCH TSC Clinic Lead Meeting 2020 THE TSA RECENTLY HOSTED THE TSC CLINIC LEAD MEETING 2020. THIS YEAR, 14 DIFFERENT NHS TSC CLINICS FROM ACROSS THE UK WERE REPRESENTED, WITH ATTENDEES COMING TOGETHER TO DISCUSS BEST PRACTICE IN THE DIAGNOSIS, TREATMENT AND MANAGEMENT OF TSC. HERE, WE HAVE OUTLINED SOME HIGHLIGHTS OF THE DAY. A workshop by Dr Frances Elmslie (St George’s University Hospital and TSA Trustee) discussed the challenges and opportunities in developing support pathways for TSC clinics, thereby helping them to operate effectively. One hurdle is that every diagnosis of TSC is unique, meaning that developing processes that are consistent across TSC clinics is a challenge. Recently, the first UK guidelines for the diagnosis, treatment and management of TSC were published (you can find the TSA’s summary of the guidelines, along with an Easy Read version, on our website). A presentation by Dr Sam Amin (University of Bristol) looked at whether TSC clinics are upholding the new guidelines. Initial findings suggest that some TSC clinics are not always following the recommendations, with a lack of funding for TSC clinics being a potential reason. As in previous years, the TSA had a key role in the clinics lead meeting. Louise Fish (Chief Executive) and Rachael Wyartt (Head of Support and Information) took the opportunity to discuss how the TSA can continue to best work alongisde all TSC clinics, including offering timely support to community members and making it as easy as possible for clinics to share information with each other. Dr Pooja Takhar (Head of Research at the TSA) and Bethan Vaughan (Evidence and Research Officer at the TSA) presented a session on patient and public involvement in research, showing how the TSA plans to work closely with those affected by TSC to improve research. Ultimately, patient and public involvement helps ensure that TSC research is always trying to answer ‘What is the greatest benefit to the TSC community?’ You can read more about patient and public involvement in TSC research on our website: https://bit.ly/2Qum337. The final session of the day focused on the International TSC Research Conference 2020, which the TSA will proudly host this November. Attendees discussed the potential for clinicians from different TSC clinics to be involved in the conference. The Community Research Education Afternoon, taking place as part of the International TSC Research Conference 2020, was also highlighted. With many connections made and next steps established, the TSC Clinic Lead Meeting 2020 was a big step in ensuring that the TSC community can get the care and treatment that they should expect and deserve. 18 | APRIL 2020
RESEARCH
Join us for the
Community Research
Education Afternoon
AS PART OF THE INTERNATIONAL TSC RESEARCH CONFERENCE 2020, COMMUNITY
MEMBERS WILL BE WELCOMED TO THE COMMUNITY RESEARCH EDUCATION
AFTERNOON ON 14 NOVEMBER!
The Community Research Education Afternoon will be an opportunity for those with a strong interest in TSC research
to hear from world-leading TSC experts, as they talk about their work across a range of presentations throughout the
afternoon.
The focus of the Community Research Education Afternoon is quick-fire talks and providing the community with as much
information as possible. You can expect to come away with an understanding of the latest TSC research and how the TSC
professional community is working hard to improve the lives of people affected by TSC.
More information on the Community Research Education Afternoon will be provided later in the year. In the meantime,
you can get in contact with the TSA via 2020conference@tuberous-sclerosis.org with any questions.
Jeans for Genes and the Community Research Education Afternoon
Thank you to everyone who donned their denim for Jeans for Genes 2019 – thanks to you, we raised a wonderful
£181!
But, that’s not all! Genetic Disorders UK, the group who organise Jeans for Genes, has also awarded us an incredible
£5,000 grant to support the Community Research Education Afternoon!
Look out for information about this year’s Jeans for Genes campaign later in the year.
SCAN | 19FUNDRAISING
Fundraising updates
Happy New Year! Ok, I know it’s a bit late to wish you that,
but we are all very excited for 2020 – as well as hosting the
International TSC Research Conference 2020 in London, we
can’t wait to see and support the many fantastic ways you
choose to help support the TSA and improve the lives of
people affected by TSC!
In January and February we started 2020 on a high, with lots
of people signing up to our 2020 Fundraising Challenge,
where fundraisers pledge to raise a set amount across the
year. From sponsored slims to sausage roll sales, we have MIKAELA AND KATHRYN, TSA FUNDRAISING
been amazed by all of the great ways that people are
raising vital funds. The majority of our fundraisers have a personal reason for supporting the TSA, with many
seeing fundraising as a way to focus on something positive!
With the end of winter and the beginning of spring comes the traditional time for Tea & SCones for TSC to begin!
So, roll up those sleeves and get baking your cakes, scones and any other yummy treats! You can host your Tea
& SCones for TSC event at any time of the year, but this year we are aiming for a flurry of Tea & SCones activity
around Global TSC Awareness Day on 15 May (see page 27 for more).
In his foreword for this issue of Scan, Sanjay is asking everyone to get as many people as possible to sign up
for TSA updates – remember to keep this in mind for fundraising too, where friends, family, co-workers and
everyone else is encouraged to get involved. If any of your friends are the active types we still have TSA places
available for Ride100 and the Great North Run!
Thank you to everyone who, following our last issue, approached employers or local businesses about
supporting the TSA. We have already had a lot of interest, including Equistone PLC who have generously donated
£25,000 and have committed to supporting the TSA throughout 2020! If you would like to put your company
forward, please let us know and we can provide you with all of the details you might need, and lots of ideas!
Mikaela and Kathryn
Increase your donation at no cost to you!
Gift Aid is a scheme that allows charities to reclaim tax on a donation made by
a UK taxpayer. If you are eligible, you can sign up to Gift Aid to give the TSA an
extra 25% on top of your donation, at no additional cost to you!
If everyone who supported us in 2019 Gift Aided their donation, the TSA could receive thousands of pounds in
extra donations, helping us to continue our work improving the lives of people affected by TSC through support,
research, information and advocacy.
If you are a UK taxpayer, please remember to Gift Aid your donations – it makes a huge difference! You can even
Gift Aid any donation you have made in the past four years!
To fill out a Gift Aid form, please visit tuberous-sclerosis.org/giftaid or call our office on 0300 222 5737 and we
will post you a form.
20 | APRIL 2020FUNDRAISING
Fundraising Champions
Derby Sax Quartet
The Derby Sax Quartet are this
issue’s Fundraising Champions. The
group have been heeling the length
of Derby come rain or shine to
help raise funds and awareness to
support people affected by TSC!
What fundraising have you
been up to and what has
the response been?
We are a sax quartet that has been
playing together for the last 10-
11 years. During this time, we’ve
supported a couple of different
charities, but since 2015 we have
supported the TSA, after our nephew
was diagnosed with TSC.
Even though TSC is not well known,
we have always had great support
from the public, especially when we are collecting outside in the cold or in bad weather! We hope our activities
raise awareness, as well as money, for the TSA. So far, we’ve raised £981!
What motivates you to do all of this?
The quartet is made up of Mellissa and Ian - who are husband and wife - Ian’s sister, and a close friend, so this is a
real family affair and the TSA is a cause very close to our hearts!
Any advice for people who want to support the TSA but don’t know how to get
started?
Do something you enjoy! It’s much easier to engage others to support you while you are doing something you love
– it makes fundraising easy!
Our advice would also be that if you are unsure about anything to speak to the TSA fundraising team, as they are
always there to help with supplies, ideas or solutions!
Thank you again to the Derby Sax Quartet!
Trusts and foundations
We would like to thank the following Trusts and Foundations for their generous support:
FUNDRAISING
Leach Fourteenth Trust The Rest-Harrow Trust
Lorimer Trust Rainford Trust
Dunn Family Charitable Trust Charles & Elsie Sykes Charitable Trust
SCAN | 21FUNDRAISING
Meet our Virgin Money
London Marathon Team
WE ARE DELIGHTED TO INTRODUCE YOU TO THE TSA LONDON MARATHON 2020
TEAM! WE CAUGHT UP WITH EACH OF OUR RUNNERS TO SEE HOW TRAINING (AND
FUNDRAISING) IS GOING!
Paula Thacker
The London
Paula is taking on the challenge in memory of her Marathon 2020
close friend and much loved TSC community member, has been
Vanessa Platt. Paula has been busy fundraising, holding postponed, now
cake stalls at the end of her local Park Run and also taking place on 4 October
organising a fundraising night at her local restaurant! 2020 (meaning more time for
training and fundraising!)
James Black
James, whose son has TSC, is always looking for ways to support the TSA. After completing
the Great North Run in 2019, James caught the ‘running bug’ and is now taking on the
London Marathon!
Lewis Bostock
Lewis was motivated by his best friend’s son, who lives with TSC: “I have two children of my
own and, as a parent, I cannot imagine the journey the family have been on, so I’m proud to have
this opportunity to raise awareness and funds for this great organisation”.
Marlon Rasho
Marlon’s son, Thomas, was diagnosed with TSC aged six months. Since then, the whole family
has been keen fundraisers. 2020 is Marlon’s year to lead the Rasho’s fundraising and he
decided to ‘start small’ and take on a marathon! Marlon wants to help the TSA because we
fund “vital research, and because of the amazing support the TSA provides families like ours”.
Lewis Baston
Lewis is running to support his sister Chloe, who lives with TSC. Lewis planned to run an Ultra
Marathon of 69 miles back in 2017 for the TSA, but unfortunately due to injury he had to pull out.
Yet, two operations and three years later, Lewis is fit and ready to take on the London Marathon!
Lewis has also secured matched fundraising from his employer Linx Printing Technologies!
Sam Cooke
Sam got his own ballot place in the London Marathon and has joined #TeamTSA to support
his niece. In preparation for the marathon, Sam has taken on a staggering six other events,
ranging from 5k runs up to half marathons!
We wish the very best to our London Marathon runners! If you would like to support them please visit
www.justgiving.com/campaign/tuberous-london-marathon-2020
22 | APRIL 2020INSPIRED BY OUR LONDON
MARATHON TEAM?
Ride 100
Great London-Surrey
North Run
Sunday 16
Sunday 13 August 2020
September 2020 Cycle through
Limited places still some of London’s
available! and Surrey’s most
stunning scenery.
We also have places available in the Scottish 10K / Half Marathon and Run
Bournemouth!
Interested in taking part? Get in contact:
fundraising@tuberous-sclerosis.org or 0300 222 57 37
Tuberous Sclerosis Association is a Company Limited by Guarantee
Registered in England and Wales No. 2900107
Charity number 1039549 (England & Wales) SC042780 (Scotland)
WHAT IF YOUR LASTING LEGACY
COULD BE A CURE FOR TSC?
By leaving a gift in your will,
you will further the search
for a cure and make a lasting
impact to the lives of people
affected by TSC for
generations to come.
After providing for those you
care about in your will, please
consider leaving a gift to the
Tuberous Sclerosis Association.
Every gift is appreciated, no
matter what size.
Please visit www.tuberous-sclerosis.org/legacy
Tuberous Sclerosis Association is a Company Limited by Guarantee
Registered in England and Wales No. 2900107
Charity number 1039549 (England & Wales) SC042780 (Scotland)FUNDRAISING
Fundraising Send your event plans and post-event pictures
thank yous
to fundraising@tuberous-sclerosis.org for a
chance to feature in the next Scan or on our
social media!
YOUR FUNDRAISER, YOUR WAY
Organising your own event can be a great way to support the TSA.
Every year, our amazing fundraisers are taking part in national fundraising events by running, cycling, hiking or
walking to raise money for TSA. But what about those who don’t want to do something quite so physical, or want to
fundraise by doing something their own way?
#TeamTSA is an enthusiastic and diverse bunch, and we have seen a growing number of people, who are affected
by TSC, getting creative with their fundraising by using their personal interests as an incredible force for good!
From balls to bake sales, many of our #TeamTSA heroes have created their own fundraising events. There’s no
stopping you from challenging and pushing yourself to achieve something you never thought possible.
Here are just some of the ways and reasons people have got involved in creative fundraising!:
Mike Andrew, Terry Gibson and the Andrew Norton raised £320 by
Yelverton Golf Club held a golf tournament completing a local event to him, the
to support Mike’s Granddaughter, Lexi. They Gloucester 50k Run. Andrew was
have raised a whopping £2,237 so far, with motivated to take on this incredible
more events planned in 2020! feat by his nephew who has TSC:
“My nephew was diagnosed with this
condition after he was found fitting
on the floor and he had to undergo
immediate brain surgery. The was a
condition I had never heard of before,
until I got a very late phone call from my
brother saying Isaac was in surgery.”
MIKE AND TERRY AT THEIR
GOLF TOURNAMENT!
Little Acorns Nursery raised £320 at
their Halloween ‘Room on a Broom’ party. Julie Rainer, the TSA’s very
Here we can see pupils riding their brooms own Information Officer,
and stirring their cauldrons. The nursery helped organise a ‘pay as you
fundraise for the TSA in honour of nursery feel’ lunch at her local church
member, Jack Gray. and raised £150!
Margaret Fletcher, a huge Sunderland AFC
fan, used her connection with the Sedgefield
Supporters Branch to organise a Christmas
quiz sheet. Quiz sheets were sold pre-match
on the supporter’s bus, in the football stands
and in the pub, post-match! This was also
supported by local team Trimdon Juniors,
with a total raised of £561! Thank you to
Margaret and everyone who took part! THANK YOU MARGARET AND
ALL HER SUPPORTERS! ANDREW’S AMAZING NEPHEW
24 | APRIL 2020FUNDRAISING
Chelford CE Primary
School raised a brilliant
£240 by hosting a
bake-off over the last
five weeks of term. Each
week had a theme, with
pupils bringing in their
bakes to be judged!
BAKE OFF WINNER, DAISY, WITH HER FRIEND KATIE!
FUN IDEAS FOR YOUR OWN
FUNDRAISER!
Tea & SCones
for TSC
Show off your baking
skills (or get some
treats from the shop,
CLARISSA, JAN AND ANNE, WITH LITTLE OLIVIA we won’t tell anyone!)
and raise funds to help
Jan Baynes, Anne Wells and Clarissa Constable ended
people affected by TSC!
a busy year of fundraising by holding a raffle and tombola,
supported by 40 local businesses! The intrepid trio raised £603! Quiz Night
There’s no right or wrong answer here –
Pro Darts Player Nigel Heydon, with the Lillington family, held
everyone loves a good quiz
a bingo fundraiser and raised £370!
Linda Smith raised £220 as part of a birthday fundraiser in BBQ
support of her son, Ben. Well done and thank you! This will definitely make your fundraising sizzle
Teja Sarvadikar walked 10,000 steps each day in November Dress down at work
and raised £300! Fantastic! An easy money maker – you could even
combine it with Jeans for Genes!
Project Spartans,
a company that
aims to improve 5th Rainham Brownies held a quiz and sold cakes,
the mental and Christmas decorations and other Christmassy
physical wellbeing items, hitting £264!
of people over the
age of 30, raised a Sylvia Peters held a Christmas Raffle at her
brilliant £440! housing complex, generating a wonderful £112!
OUR FRIENDLY FUNDRAISING TEAM IS HERE TO HELP
Don’t forget that we are here to help with your fundraising, such as ideas on what you could do, tips on planning
your event and ways to maximise your fundraising. We will also send you our handy fundraising pack! Contact a
member of our fundraising team now on 0300 222 3757 or fundraising@tuberous-sclerosis.org.
Thank you to everyone who bought a TSA christmas card or other festive items. You helped us raise a fantastic
£1,014 and boost awareness of TSC far and wide during the festive season!
What was the furthest distance you sent a TSA christmas card? Let us know on Facebook or Twitter!
SCAN | 25FUNDRAISING
CORPORATE FUNDRAISING
Members of our community have been busy talking to their employers about the work of the TSA,
leading to some amazing support!
Val and John Power nominated the TSA as a benefactor of the
Lendlease Guvnors Club Ball, leading to the TSA receiving a
jaw-dropping donation of £12,000!
Clarissa Constable placed a TSA collection box on her desk at
work, which has already raised £40!
The Week magazine selected the TSA as its charity to highlight
in their 1st February issue, helping us raise awareness of TSC to
their 150,000 readers!
Gift Horse, a gift shop in Market Rasen, has gathered £35 in VAL AND JOHN AWARDING THE DONATION
their collection tin! Thank you! TO LOUISE FISH (TSA CEO)
John Lewis Logic Park have been at it again, raising money for the TSA at the end of last year through a Christmas
Hamper Raffle and a sale of homemade sweets and cakes. This brings their total raised to date to an epic £3,475!
Equistone Partners Europe
Limited has selected the TSA
as their ‘Charity of the Year
2020’! Community member Christine Johnstone works at
Equistone, and the whole team wanted to support her and her
daughter, Bailey. The team has a lot of fundraising planned,
with sponsored slims, poker nights and epic bike rides to start
their busy 2020!
To kick off the year, Equistone Partners Europe Limited have
made an incredible donation of £25,000! The TSA team collected
the donation from Christine when we held our all-staff meeting
at the Equistone offices in February – Equistone even donated
their office space to give us somewhere to hold our staff CHRISTINE JOHNSTONE AWARDING THE DONATION
TO LOUISE FISH (TSA CHIEF EXECUTIVE) AND MARTIN
meeting! SHORT (TSA VICE-CHAIR)
The
Ramsdens
Branch in
Beeston near Nottingham have selected the TSA as their Charity
of the Year 2020! They are collecting unused foreign currency
and out-of-date bank notes in-store and will donate the value of
the currency to the TSA!
There are lots of ways to get your employer or a local company involved in TSA fundraising, such as:
Ask a local store or coffee shop to host a collection tin
Nominate the TSA as the Charity of the Year at your work
Check if your employer has a matched giving scheme – in some cases this could double your fundraising!
For more ideas on getting a business involved in corporate fundraising, please visit:
tuberous-sclerosis.org/corporate
26 | APRIL 2020You can also read
