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TOFS Awareness Week 2024 round-up

Last week we asked members to join in and help us raise the awareness of OA/TOF and the TOFS charity. It was amazing to see your stories shared across social media and in the press. Thank you all so much for getting involved.

Now TOFS Awareness Week has ended, we thought it would be great to take a look back at everything that happened.

And what a way to kick things off! Singer/Songwriter Tom Bright became our latest celebrity ambassador and shared his story with Sky News, BBC Radio London and, of course, TOFS. Watch Tom’s story below.

Throughout the week we saw members sharing their own stories on social media and downloading our resources to share with political representatives and medical professionals. A number of members also had their story featured in local press and you can read a selection here.

The week was also an opportunity to celebrate the work of our amazing volunteers, including our TLCsTOFS Local Contacts

This UK wide support network of parents of children born with OA/TOF who give their time and experience freely to other members.

Rare Disease Day 2024

Rare Disease Day fell, quite aptly, on the rarest day of the year, the 29th of Feb. This campaign highlights the 300 million people globally living with a rare disease and advocates for equitable access to diagnosis, treatment, care, and social opportunities for all affected.

TOFS, once again took the opportunity to encourage members to #LightUpForRare and join the global chain of lights to highlight the campaign.

Fundraising is an amazing way to help support TOFS and it was great to see a number of new fundraisers set up during the week.

We also had people signing up to take part in our challenge events (running throughout the year). If you haven’t signed up yet, please head over to our fundraising challenges page and get involved.

On Saturday, we focussed on our work with UK and international partners – a community of organisations all working together to raise awareness and provide support for related conditions.

By working with these partners, we aim for a world in which those born with OA/TOF live long and healthy lives, unconstrained by the impact of being born with these conditions.

You can find out more about our collaborations here

Now that TOFS Awareness Week has ended for another year, we would like to thank you all for sharing our resources with medical professionals, telling your stories, setting up your fundraisers and for just getting involved. 

But the work doesn’t stop here.

Raising awareness of OA/TOF is an ongoing fight and one that remains so important.

Hear from TOFS Celebrity Ambassador, Charlotte Fisher on her experience when her son, Elton was born last year.

There’s still time to get involved. 

Head over to the TOFS Awareness Week page to download everything you need to help raise awareness of OA/TOF.

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