I hope you don’t mind me writing to you, but we are trying to reach as many of our connections as possible and hoping you can help me spread a little awareness this coming week of my son’s rare condition. Our son George 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. After visiting the Senedd last week, the following article was published in the South Wales Evening Post.
Dawsons Property, South Wales & Agents Giving Regional Ambassador
TOFS Awareness Week
The TOFS charity spends lots of time supporting those affected by this devastating condition and their families and also supporting research into the condition. Currently the oldest surviving TOF is 69, and spreading awareness where possible.
26th February – 4th March 2023 is TOFS awareness week (along with rare disease day on 28th February and Swallowing Awareness Day on 16th 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.
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, 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. Here are the boys down the beach at their first meeting.
We would be so grateful for any support you could provide by spreading awareness with us this year and for this, we thank you wholeheartedly. We are getting some great traction now in our awareness campaigns and it would be great to have your support again this year.