The Tuberous Sclerosis Association

Jeans for Genes 2020
2020-09-14 - 2020-09-20
Jeans for Genes
Jeans for Genes Day is an annual fundraising campaign by Genetic Disorders UK, the national charity that supports individuals and families affected by genetic disorders.
The Tuberous Sclerosis Association (TSA) are a proud partner of Genetic Disorders UK, meaning that you can get involved in Jeans for Genes and help raise funds and awareness to support people affected by Tuberous Sclerosis Complex (TSC)!
What is Jeans for Genes Day?
Between Monday 14 – Sunday 20 September 2020, thousands of people around the UK help raise funds for people affected by genetic disorders by asking schools, workplaces or community groups to wear jeans for the week.
If you get involved on behalf of the TSA, half of the proceeds that you raise will go to the TSA!*
*Jeans for Genes Day is a fundraising initiative organised by the UK Genetic Disorders Partnership Network. We are a member of the Partnership, so if you organise for your school or workplace to hold a Jeans for Genes day and they haven’t held one in the last three years, the Tuberous Sclerosis Association receives 50% of the money raised. It’s as simple as that!
How to register for Jeans for Genes and raise money for people living with TSC
To ensure that the Tuberous Sclerosis Association receives 50% of the money you raise, just follow these three simple instructions:

Sign-up and order your fundraising pack from the Jeans for Genes website here
Fill in the free fundraising pack form on the Jeans for Genes website
For the question “Are you affiliated to one of our partners?” choose the Tuberous Sclerosis Association from the drop-down menu.

This ensures that the TSA and Jeans for Genes know that you want to fundraise for us!
Once you’ve collected those fantastic funds, just send them back to Jeans for Genes and they’ll take it from there.
Remember to let us know about your fundraising
Don’t forget to tell us about your brilliant Jeans for Genes event, so that our fundraising team can help to support you. Either email fundraising@tuberous-sclerosis.org or ring the team on 0300 222 5737

Virtual Great North Run 2020
2020-09-13 | Anywhere
Virtual Great North Run 2020 (Sunday 13 September)
While everyone can’t gather together to run the famous 13.1 mile route, you can still ‘Be Your Greatest’ and support people living with TSC.
The Virtual Great North Run is a free to enter half marathon challenge. There’s no minimum sponsorship pledge, we simply ask you to raise what you can.
With their partners ViRACE, the Great North Run organisers are creating an app to bring you an innovative virtual experience with audio clips from the event so that you will hear the sounds of the Great North Run. From an upbeat warm-up led by the legendary Roy Gayle, to chants of OGGY OGGY OGGY, and the iconic roar of the Red Arrows fly-past, they are making it feel as much like the real event as we can!
The event will mimic a race format so that all runners start their Virtual Great North Run at the same time on 13 September 2020 and complete the same 13.1 mile distance. Runners will be tracked throughout the virtual race and will be able to view results after the race has finished.
To register please visit : https://www.greatrun.org/great-north-run

Northern Ireland Get Together Virtual Meeting 2020
2020-09-12 13:00 - 15:30 (Europe/London)
Sign up below for your free tickets to the first ever virtual Northern Ireland Get Together!
This year’s Northern Ireland Get Together is going virtual! Join us on Saturday 12 September 1pm – 3pm via web conferencing platform Zoom for a session focused exclusively on being affected by TSC and living in Northern Ireland.
What you can expect at the Northern Ireland Get Together 2020

Issues important to those living in Northern Ireland and affected by TSC
A look at the impact that covid-19 has had on TSC-affected families in Northern Ireland
Opportunities to speak to the Belfast TSC Clinic about what matters to you
The chance to get to know your fellow Northern Ireland community

Register for the event below and get ready for a great day. Tickets will be available until 11am Saturday 12 September.

Virtual MyRideLondon
2020-08-15 - 2020-08-16 | Anywhere
My RideLondon (15 -16 August 2020)
Join the nationwide virtual challenge, My Prudential RideLondon, and be part of the world’s greatest festival of cycling. Choose your distance, plan your route and get cycling!
So RideCardiff, RideManchester, RideRoundThePark…..the opportunities are endless!
My RideLondon is your chance to get on your bike – or scooter, skateboard, trike, tandem, penny farthing, roller skates, unicycle – and take part in the world’s greatest festival of cycling, wherever you live and with whoever you like – family, friends or by yourself. It’s your ride, your way, for the TSA!
Visit myridelondon.co.uk to register ,choose your distance and set up a fundraising page for the TSA. Then before the event weekend of 15 and 16 August, you’ll be able to download the My Prudential RideLondon app – from here you can track and log your ride.
You are invited to complete one (or more!) of four challenges over the weekend: 19 miles for riders in search of a challenge, 46 miles for riders who want to push the boundaries, a more taxing 100 miles for those who want to go all-out or the distance of your choice at My Prudential RideLondon FreeCycle.
To get involved please visit : https://myridelondon.co.uk/
The event is free to enter and there is no minimum sponsorship pledge, we simply ask you to raise what you can.

Virtual session: Young people, epilepsy and the 'new normal'
2020-07-29 18:00 - 19:00
Are you a parent, carer or guardian of a young person who lives with TSC-related epilepsy?
Join the TSA’s virtual session ‘Epilepsy, young people and the ‘new normal” on Wednesday 29 July at 6pm, where we are delighted to be welcoming Lisa O’Brien (Head of Health, Young Epilepsy) to discuss epilepsy-related key issues for young people as lockdown and shielding begin to ease.
Topics to be covered include:

Accessing medicine and clinical support as we transition to the ‘new normal’
How stress can impact on seizures and how it might be possible to help manage this
Key issues and strategies for young people living with epilepsy as we enter the ‘new normal’
A refresher on ‘Key things to remember’ about being out and about and living with epilepsy

Tickets will be available until 4pm on 29 July.

Scottish Get Together virtual meeting 2020
2020-07-25 13:00 - 15:30
Sign up below for your free tickets to the first ever virtual Scottish Get Together!
Despite the coronavirus outbreak, we’re determined to make sure that the TSC community can come together. That’s why this year’s Scottish Get Together will be virtual!
Join us on Saturday 25 July via web conferencing platform Zoom for a session focused exclusively on being affected by TSC and living in Scotland.
Scottish Get Together 2020 agenda
* 13:00 – 13:10. Welcome and introductions, housekeeping
* 13:10 – 13:45. An overview of the TSA Support Line
* 13:45 – 13:50. Break
* 13:50 – 14:45. Q&A with Dr Shelagh Joss (Glasgow TSC Clinic)
* 14:45 – 14:50. Break
* 14:50 – 15:20. Scottish Association for Mental Health – Let’s Talk project
* 15:20 – 15:30. Thank you and close
Our thanks go to the Bank of Scotland Foundation, for kindly providing a grant towards this event.

Virtual session: Strategies for better sleep
2020-07-15 18:00 - 2020-07-28 19:00
Are you or your family struggling to get a good night’s sleep?
For the TSC community, many of us find it hard to have regular and restful sleep. With everything happening in the world, this is now harder than ever. Register today for our ‘Strategies for better sleep’ virtual session to find out more about:

The importance of sleep
Why and how sleep can be disturbed in stressful environments
Practical guidance on getting a good night’s sleep

The TSA is delighted to be welcoming Kerry Davies to the session – a certified sleep practitioner and learning disabilities nurse, who has experience of roles within mental health, hospital settings, schools and with families of children with SEN, providing her with extensive knowledge on how to help almost any family.

Virtual session: Managing aggression and violent behaviours
2020-06-24 18:00 - 19:00
Would you like to learn more about managing aggression and violent behaviours in TSC?
Register today for our aggression and violent behaviours virtual session, in which we will cover topics including:

Triggers for aggressive behaviour and how to help predict them
Strategies to help the transition back to the ‘new normal’ following lockdown measures
Common changes in a child’s behaviour as they grow up

The TSA is delighted to be welcoming Dr Tanjala Gipson (TAND Clinic Director, Le Bonheur Children’s Hospital) to the session – a world leader on TAND and behaviour management in TSC.

Welsh Info Day virtual meeting 2020
2020-06-06 13:00 - 15:30
Sign up below for your free tickets to the first ever virtual Welsh Info Day!
Despite the coronavirus outbreak, we’re determined to make sure that the TSC community can come together. That’s why this year’s Welsh Info Day will be virtual! Join us on Saturday 6 June via web conferencing platform Zoom for a session focused exclusively on being affected by TSC and living in Wales.
Further details on speakers and an agenda will be shared as soon as possible.

Virtual session: Managing anxiety and stress (with Anxiety UK)
2020-05-27 18:00 - 19:00
Do you want to know how to manage anxiety during the covid-19 pandemic?
Sign-up below for the free virtual session ‘TSC, anxiety and covid-19’, where the TSA and Anxiety UK will discuss living well during the coronavirus pandemic and coping strategies for anxiety and anxiety-related depression.
The session is for everyone in the TSC community, including those living with the condition and family members/loved ones and TSC professionals.
For over 50 years, Anxiety UK has worked to relieve and support those living with anxiety and anxiety-based depression by providing information, support and understanding via an extensive range of services, including one-to-one therapy.

Virtual session: TSC carer support and covid-19 (with Carers UK)
2020-05-20 18:00 - 19:00
Are you, or is someone that you know, caring for someone living with TSC?
Sign-up below for the free virtual session ‘TSC carer support and covid-19’. The TSA are delighted to be hosting the session alongside Carers UK, the UK’s only national membership charity for carers.
During the session, we will discuss a range of topics including:

Carers fatigue and how to ask for help
Allowing carers into the home during lockdown
Keeping in touch with loved ones in their residential or care home
Looking after yourself, as well as others, during covid-19
Accessing respite and other support

Don’t miss out on this fantastic opportunity hear from one of the most prominent organisations for carers in the UK.

Virtual session: TAND and covid-19
2020-05-15 18:00 - 19:00
Do you or does someone close to you live with a TSC-Associated Neuropsychiatric Disorder (TAND)?
Sign-up now for the free ‘TAND and covid-19’ virtual session below. The special session will be hosted by TAND experts Professor Petrus de Vries (Professor of Child & Adolescent Psychiatry) and Professor Anna Jansen (Head of Child Neurology, UZ Brussels).
During the session, we will discuss:

TAND at the time of covid-19
Coping with challenging behaviours
The upcoming research project, The TANDem Project

The event is proudly taking place on Global TSC Awareness Day.

City of Norwich Half Marathon
2020-05-03 | Norwich
City of Norwich Half Marathon
The race starts and finishes within the Norfolk Showground and follows a rural single lap route through the parishes of Easton, Honingham, Colton, Barnham Broom, Marlingford and close to Easton College. The first half of the course is pretty flat with one or two little bumps in the second half. All roads along the race route are closed to through traffic while the race is in progress.
Taking part is easy…
Step 1 – sign up for your running challenge
Choose your event (like this one) and sign up with the event organisers directly here.
Step 2 – let us know about your running challenge
Once you have registered for your challenge, let us know below so we can send you a free TSA running top and a fundraising pack. We’ll be with you at every step to provide useful tips and advice.
TELL US ABOUT YOUR PLACE
×Tell us about your place in an event
Get your own place in an event and you can still join #TeamTSA for all the same perks and support – just sign up with the relevant event organiser and once you have your place confirmed, fill in the form below.
Why get your own place instead of a charity place?
If you buy your own place directly with the event organisers, 100% of your fundraising goes to the TSA and we won’t ask you to set a fundraising target!
You will of course still be part of #TeamTSA and receive the same personal support throughout your fundraising journey, ensuring you reach the finish line in the knowledge you’re providing help for today and a cure for tomorrow for every affected by TSC.
If you have any questions about booking your own place, please call us on 0300 222 5737 or email fundraising@tubeorus-sclerosis.org

About the eventWhat event are you taking part in?* Do you have your own place in this event?*

Yes

No- not yet!
About youName

First

Last

Address

Street Address

Address Line 2

City

Postcode

Date of birth

MM slash DD slash YYYY

Email*

Phone number About your fundraisingHow much are you hoping to raise?* Why have you chosen to support the TSA?*Running vest size (all our vests are unisex)Extra smallSmallMediumLargeExtra largeDouble extra largeWould you be happy for your story to be featured in the media/social media?*Coverage in the media and online can really help with raising awareness of the charity. We will never do this without contacting you first.

Yes

No
Keeping in touch*

Select All

I am happy to be contacted by email

I am happy to be contacted by post

I am happy to be contacted by phone

I am happy to be contacted by SMS
By providing your details we will keep you up-to date with our latest news about the work we do, the research we sponsor and other ways you can get involved, including fundraising. We promise never to share your personal information with any other organisation outside of Tuberous Sclerosis Association for their marketing purposes.

For full details on how we use your information please visit www.tuberous-sclerosis.org/privacy
You are free to change your mind at any time.CAPTCHAPhoneThis field is for validation purposes and should be left unchanged.

Close
Step 3 – set up your fundraising page
Once you’ve told us about your challenge we will send you a fundraising pack full of ideas on how to raise vital funds. The quickest and easiest way is to setup an online fundraising page on Just Giving.

Tour de Yorkshire
2020-04-27 - 2020-05-03 | Leeds
Tour De Yorkshire Ride
The Tour de Yorkshire Ride offers a unique mix of Tour de France delivery combined with Yorkshire hospitality and beauty resulting in a sportive dream day. This is your chance to ride many of the same roads as the pros before they do, including the pro finish line, complete with support from the waiting crowds.
Taking part is easy…
Step 1 – sign up for your running challenge
Choose your event (like this one) and sign up with the event organisers directly here.
Step 2 – let us know about your running challenge
Once you have registered for your challenge, let us know below so we can send you a free TSA running top and a fundraising pack. We’ll be with you at every step to provide useful tips and advice.
TELL US ABOUT YOUR PLACE
×Tell us about your place in an event
Get your own place in an event and you can still join #TeamTSA for all the same perks and support – just sign up with the relevant event organiser and once you have your place confirmed, fill in the form below.
Why get your own place instead of a charity place?
If you buy your own place directly with the event organisers, 100% of your fundraising goes to the TSA and we won’t ask you to set a fundraising target!
You will of course still be part of #TeamTSA and receive the same personal support throughout your fundraising journey, ensuring you reach the finish line in the knowledge you’re providing help for today and a cure for tomorrow for every affected by TSC.
If you have any questions about booking your own place, please call us on 0300 222 5737 or email fundraising@tubeorus-sclerosis.org

About the eventWhat event are you taking part in?* Do you have your own place in this event?*

Yes

No- not yet!
About youName

First

Last

Address

Street Address

Address Line 2

City

Postcode

Date of birth

MM slash DD slash YYYY

Email*

Phone number About your fundraisingHow much are you hoping to raise?* Why have you chosen to support the TSA?*Running vest size (all our vests are unisex)Extra smallSmallMediumLargeExtra largeDouble extra largeWould you be happy for your story to be featured in the media/social media?*Coverage in the media and online can really help with raising awareness of the charity. We will never do this without contacting you first.

Yes

No
Keeping in touch*

Select All

I am happy to be contacted by email

I am happy to be contacted by post

I am happy to be contacted by phone

I am happy to be contacted by SMS
By providing your details we will keep you up-to date with our latest news about the work we do, the research we sponsor and other ways you can get involved, including fundraising. We promise never to share your personal information with any other organisation outside of Tuberous Sclerosis Association for their marketing purposes.

For full details on how we use your information please visit www.tuberous-sclerosis.org/privacy
You are free to change your mind at any time.CAPTCHACommentsThis field is for validation purposes and should be left unchanged.

Close
Step 3 – set up your fundraising page
Once you’ve told us about your challenge we will send you a fundraising pack full of ideas on how to raise vital funds. The quickest and easiest way is to setup an online fundraising page on Just Giving.

Tour de Gwent
2020-04-26
The Tour de Gwent
Is the annual cycling event for everyone! With 6 carefully designed routes to choose from, each with their own unique features, the event offers something for cyclists of all abilities. From hard-core cyclists looking for an epic leg-burning challenge to families who’d prefer a pleasant ‘there-and-back’ along the River Usk, you won’t be disappointed.
Taking part is easy…
Step 1 – sign up for your running challenge
Choose your event (like this one) and sign up with the event organisers directly here.
Step 2 – let us know about your running challenge
Once you have registered for your challenge, let us know below so we can send you a free TSA running top and a fundraising pack. We’ll be with you at every step to provide useful tips and advice.
TELL US ABOUT YOUR PLACE
×Tell us about your place in an event
Get your own place in an event and you can still join #TeamTSA for all the same perks and support – just sign up with the relevant event organiser and once you have your place confirmed, fill in the form below.
Why get your own place instead of a charity place?
If you buy your own place directly with the event organisers, 100% of your fundraising goes to the TSA and we won’t ask you to set a fundraising target!
You will of course still be part of #TeamTSA and receive the same personal support throughout your fundraising journey, ensuring you reach the finish line in the knowledge you’re providing help for today and a cure for tomorrow for every affected by TSC.
If you have any questions about booking your own place, please call us on 0300 222 5737 or email fundraising@tubeorus-sclerosis.org

About the eventWhat event are you taking part in?* Do you have your own place in this event?*

Yes

No- not yet!
About youName

First

Last

Address

Street Address

Address Line 2

City

Postcode

Date of birth

MM slash DD slash YYYY

Email*

Phone number About your fundraisingHow much are you hoping to raise?* Why have you chosen to support the TSA?*Running vest size (all our vests are unisex)Extra smallSmallMediumLargeExtra largeDouble extra largeWould you be happy for your story to be featured in the media/social media?*Coverage in the media and online can really help with raising awareness of the charity. We will never do this without contacting you first.

Yes

No
Keeping in touch*

Select All

I am happy to be contacted by email

I am happy to be contacted by post

I am happy to be contacted by phone

I am happy to be contacted by SMS
By providing your details we will keep you up-to date with our latest news about the work we do, the research we sponsor and other ways you can get involved, including fundraising. We promise never to share your personal information with any other organisation outside of Tuberous Sclerosis Association for their marketing purposes.

For full details on how we use your information please visit www.tuberous-sclerosis.org/privacy
You are free to change your mind at any time.CAPTCHAEmailThis field is for validation purposes and should be left unchanged.

Close
Step 3 – set up your fundraising page
Once you’ve told us about your challenge we will send you a fundraising pack full of ideas on how to raise vital funds. The quickest and easiest way is to setup an online fundraising page on Just Giving.

Join us at the Outlook virtual meeting on 18 April
2020-04-18 13:00 - 15:30
Sign-up now for free tickets to the Outlook virtual meeting, taking place via web conferencing on Saturday 18 April 2020!
Are you an adult mildly affected by TSC? Join us to make new friends, share experiences about living with TSC, and enjoy unique workshops.
Tickets are available for adults aged 18+ who are mildly affected by TSC.
Information on how to join the Outlook virtual meeting will be provided to you after registering for the event. Any questions should go to comms@tuberous-sclerosis.org.
More information about the Outlook virtual meeting is available here.

Family Fun Day Portsmouth - Tickets now on sale!
2020-03-14 | Blue Reef Aquarium Portsmouth, United Kingdom
.
Purchase tickets below for the TSA Family Fun Day at Blue Reef Aquarium Portsmouth on Saturday 14 March 2020!
Subsidised tickets purchased through the TSA will be ordered by the charity through Blue Reef Aquarium. Your tickets will be available from the aquarium on the day of the event.
Tickets are limited to x2 adult and x2 child tickets per family, so that as many families as possible can have the opportunity to come along. Families requiring more tickets can contact Blue Reef Aquarium to purchase standard tickets.
More information about the day is available here.

Welsh Info Day 2019
2019-09-28
Welsh Info Day 2020
Do you live in Wales and are affected by Tuberous Sclerosis Complex (TSC)?
Come along to the Welsh Info Day, our annual flagship event especially for the TSC community in Wales!
Every year, at the Welsh Info Day you can:

Meet and get to know your fellow TSC community in Wales, including individuals and families affected by the condition
Talk with the TSA about our upcoming plans and projects, with a Welsh focus
Hear external Wales organisations talk about how they might be able to help you and your family

Previous events have included talks and workshops by:

Wales Gene Park / Genetic Alliance UK
Mencap Cymru
Cardiff TSC Clinic

The Welsh Info Day typically takes place early Autumn, with a date and further information about the Welsh Info Day 2020 expected by Spring 2020.
Would you like to be involved in organising the Welsh Info Day, or have some ideas on how it could be improved?
We would love to have you involved! Contact us to ask about helping us to organise and manage the day.
Related pages
Outlook 2020

Big Day

Family Fun Day

Scottish Get Together

• Northern Ireland Info Day

Scottish Get Together 2019
2019-08-31 - 2019-09-07
Scottish Get Together 2020
Do you live in Scotland and are affected by Tuberous Sclerosis Complex (TSC)?
The Scottish Get Together is for you!
The Scottish Get Together is an opportunity for Scotland-based members of the TSC community – including people living with the condition, their family and carers – to:

Meet and get to know people living in TSC who also live in Scotland
Talk with the TSA about projects and plans, all with a Scotland-focus
Hear external Scotland organisations and charities about how they might be able to help you and your family with a range of services

Previous speakers at the Scottish Get Together 2019 have included:

Cerebra
Contact
Epilepsy Scotland
Family Fund
Scottish Association for Mental Health

The Scottish Get Together typically takes place late Summer, with a date and further information about the Scottish Get Together 2020 expected by Spring 2020.
Would you like to be involved in organising the Scottish Get Together, or have some ideas on how it could be improved? We would love to have you involved! Contact us to ask about helping us to organise and manage the day.
