Naomi Webborn of Dawsons Property Swansea brings to light her plight in support of her son.  Naomi tells “Our son was born with a rare condition 12 years ago.  Since then we have been supported by the charity ‘tofs’ set up in relation to his condition oa/tof.  The charity spend lots of time supporting tofs and their families and also supporting research into the condition as the current oldest surviving tof is 69 and spreading awareness where possible.

Next week 26^th February – 4^th March 2023 is TOFS awareness week (along with rare disease day on 28^th February and Swallowing Awareness Day on 16^th March) and this year we are trying to raise the profile of the rare condition as best we can along with the charity TOFS who support us families.

It would be great if the poster attached (celebrating TOFS Awareness Week 2023) could be used asap to spread this awareness wherever you can …your intranet, social media.  The poster is colourful and not too much info but enough to make you look and read (we give full permission to be used on display physically or across media channels).

The press we achieved in the awareness week in 2021 brought a TOF family living just a few miles away in contact with us.  The grandmother of the TOF child saw the article in the paper and sought me out on Facebook and they are now active members of the TOF charity and community and the two boys (just 4 months apart in age) are now in contact with each other and will support each other through their lives. (please find this story that hit Wales online and the Evening Post here: Swansea mum finds lifeline over son’s rare medical condition | InYourArea News ), what an achievement, and here are the boys down the beach at their first meeting”.