In June 2022, we want you to join the TSC Clinics Virtual Challenge: Walk, jog or run (or anything else) a distance that you can manage during June, as we try and cover the entire 1,670 miles that stretch between all NHS TSC Clinics across the UK.
Every single step on our virtual journey across every TSC clinics counts, whether you go for a short stroll or push yourself to longer distances. If everyone affected by TSC in the UK completed just one mile in June, we would smash our target!
This is truly a joint challenge for everyone, whatever your fitness levels. You can even decide to take the challenge on by yourself, or to setup a team.
Ready!
- Decide whether to go on your own or to setup a team
- Confirm how many miles you want to cover in June 2022 – you might want to travel the equivalent distance between two TSC clinics
- Set your fundraising target
Set!
- Create your sponsorship page
- Tell everyone that you’re taking part in the TSC Clinics Virtual Challenge and how they can sponsor you
Go!
- Walk, wheel, jog, run (or anything else!) towards your target
- Raise much-needed funds and awareness to improve the lives of people affected by TSC
Common questions
Tuberous Sclerosis Complex (TSC) is a rare genetic condition that affects around 1 million people worldwide.
A person is born with TSC, meaning that the condition is not something that a person can develop over time. However, problems from TSC might not be obvious until later in life.
TSC causes non-cancerous growths to develop in different organs around the body, such as the brain, eyes, heart and skin. Issues caused by TSC are as a result of the growths developed due to the condition.
Common problems from TSC can include epilepsy, autism, learning difficulties and kidney problems. However, the way that TSC impacts on a person’s life can vary considerably.
The diversity of how TSC can impact a person’s life means that measuring the number of people living with the condition can be difficult, with estimates that between 3,700 – 11,000 people in the UK live with TSC.
Our understanding of TSC, its influence on the body and how to manage the condition has improved significantly in recent years. This has led to improved diagnosis, medical care and support structures for individuals and families affected by TSC. Thanks to our improved understanding of TSC, the majority of people living with the condition can expect to live healthier lives with a normal life expectancy.
By taking part in TSC Clinics Virtual Challenge you’re not only improving your own health and wellbeing, but you are providing support to everyone impacted by TSC in the UK.
It is estimated that that TSC affects 1 in 6,000 births, meaning every year an estimate 100 babies are born in the UK with TSC. For many having TSC is like walking through a minefield, as it is impossible to know when another symptom will present itself. For those needing help, the TSA offers a wide range of support, including first steps after a recent diagnosis, accessing emotional support during a tough period, or securing a referral from a GP to an NHS TSC clinic.
By raising vital funds for the TSA, you are helping us to accelerate understanding and awareness of TSC and are ensuring that those affected get the crucial help and support they need, both today and in the future.
We work hard for the TSC community across research, support and advocacy:
Research
The TSA works with health professionals, scientists and organisations, on ground-breaking research into TSC.
This includes funding researchers and ensuring healthcare professionals have access to the latest information on the diagnosis, treatment and care of people with TSC.
Support
Over 11,000 people in the UK live with Tuberous sclerosis complex. 10 babies are born with TSC every month in the UK.
The Tuberous Sclerosis Association provides support to people affected and their families and works with health, education and social care professionals to develop easy-to-understand resources that can help provide the best care and treatment.
We are here for anyone who needs emotional or practical help, whether it is through our support line, website or our community events.
Advocacy
By being part of TSC Clinics Virtual Challenge, you are helping us to raise awareness of TSC and the challenges people face living with the disease.
The more people know about TSC the more allies we have backing us to provide help for today and a cure for tomorrow.
Click register and follow the simple instructions to select the challenge and fundraising target of your choice.
Of course, simply give us a call on 0300 222 5737 or email fundraising@tuberous-sclerosis.org and we will send you a fundraising pack out in the post with everything you need to take part. Please do keep a note of any miles you cover before your pack arrives though!
Once you’ve registered for TSC Clinics Virtual Challenge and set up your sponsorship page, you can connect to your Strava account to your page by selecting the ‘connect to Strava’ option when logged into your Sponsorship page. If you have any problems doing this please visit the Enthuse help page.
If you don’t use Strava, you can also manually enter your steps, distance or activity to your sponsorship page, if you want more information on how to do this please visit the Enthuse help page. You can also download a Mile tracker to print and use to log your distance!
Please note – only miles logged from June 1st will count towards the challenge. Any miles recorded before this time will be removed from your total when the count is reset.
If you are collecting donations please download a sponsor form to ensure we can claim gift aid where applicable. You can record offline donations by logging into TSC Clinics Virtual Challenge and going to the My Fundraising pages’ section of your Dashboard. You will find an “Add Offline Donation” button there which will take you to a form to record the donation details. Team captains can also do this for team donations through the Team Dashboard.
If you want more information on how to do this please visit the Enthuse help page.
If you can’t find the answers you need, then please get in touch with us via fundraising@tuberous-sclerosis.org and we will be happy to help.
If you are using a tracking app, it will take 24 hours for your distance to show up on your Fundraising Page. If you are manually entering your steps and these are not showing on your page, please get in touch with us via fundraising@tuberous-sclerosis.org .
You can create a team when you sign up to take part in TSC Clinics Virtual Challenge. As part of the registration process, just choose a team name and set a team challenge and fundraising target before you continue. You can add a team photo and information about your team at this stage, or you can do that later on through your Fundraising Dashboard.
As team captain, you can invite friends, family members and colleagues to join your TSC Clinics Virtual Challenge team via email or social media. Visit your Team Dashboard where you will find a link you can share. If you have set your team up so anyone can join, there will also be a ‘join us’ button on the team’s challenge homepage.
You sure can! To change your target, visit your Fundraising Dashboard and select ‘My Fundraising Pages’ and click ‘edit’. From here, you can change the amount of money you are aiming to raise (there is a minimum fundraising target of £10).
Feel free to get in touch with us via fundraising@tuberous-sclerosis.org if you need any help.
It is really easy to update your team’s information. The team captain can do this through the Team Dashboard when they are logged on to TSC Clinics Virtual Challenge by clicking ‘team pages’ then ‘manage team’. The team captain can also add blogs and photos, record offline donations and activities. New members who join the team will automatically be shown on the team’s page and don’t need to be added manually.
Nick Punnett – An inspirational ambassador for TSC Clinics Virtual Challenge
Nick, Elaine Punnett with dog and Daisy May
Nick and Elaine Punnett have been married for 37 years. Elaine has TSC and was diagnosed at 16 years old. Nick and Elaine love to walk in their local countryside with their dog, Daisy May.
As with many families, over the last 2 years , covid lockdowns have meant a huge number changes have had to be made to their normal routine and living arrangements. Their main aim was to keep Elaine safe and to keep Nick working. To enable these things to happen Nick had to move into the garden Summer House, when he had finished a shift pattern, to self-isolate before had moved back into the house with Elaine.
Nick and Daisy May while out walking
This was how Nick and Elaine lived for 12 months. While living like this Nick found that walking their dog Daisy May was the thing that kept him “centred”. Nick says that getting out once or twice a day was a huge de-stressor, and it takes him out of the silliness of life!
So, in 2021, Nick has set himself and Daisy May a goal of completing a Virtual walk to 6 clinics a route of 1,007 miles!
Even completing just one mile would make a huge difference, as we virtually travel to every NHS TSC clinic
TSC Clinics Virtual Challenge resources
Make a one off or regular donation
£10 Can allow us to send a welcome pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.
£25 Can help us develop materials that are included in our support services, flagship events or campaigns.
£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.
To provide help for today and a cure for tomorrow