Back in 1982, when parent Linda Morris was interviewed on BBC radio’s Women’s Hour, she talked about the isolation of being a mother of a child born with OA/TOF and her frustration at the lack of available information*. Fortunately, there was some response to her request to meet other parents, and we’d like to think, forty years later, that this isolation and lack of information is a thing of the past.
What Linda started in 1982 – a small number of parents supporting each other – has now become the largest English-speaking OA/TOF support group with over 3000 members/associates in 65 countries.
We’re delighted that some of those original members are still associated with the charity, and that Linda, the founder, hopes to get involved with our celebrations this year.
The world has changed in so many ways, but nothing can change the fear that’s felt when parents have a child who needs immediate surgery for conditions that many haven’t even heard of. And, with the first successful surgery taking place in the 1940s, combined with the fact that OA/TOF is relatively rare – it’s only now, seventy years later, that there’s a cohort of adults to tell us about the implications of being born with OA/TOF.
So, there’s still much to be done. But thanks to our tremendously supportive membership, and the unfaltering support from our management board and growing volunteer team, we’re in a position that many charities would love to be in right now. And, despite the challenges presented by Covid, we’re stronger than ever and we plan to make 2022 one of our best years yet.
Here’s just a taste of what we have planned:
Brand new website
Our intuitive and user-friendly new-look website is the perfect way to get the anniversary celebrations underway.
We’re also very proud of our recent addition – an online library for healthcare professionals (that includes our helpful books) – and we’ll be asking for your support over the year in ensuring a wide range of medics have access to it.
40th Anniversary Awareness Week
28 February – 6 March
Our annual Awareness Week is always a huge event in the TOFS calendar and this year, we’ve planned it to coincide with 2022 Rare Disease Day on 28 February. Can you help us raise our profile? The hunt is still on for a celeb patron. Someone like Sir Kevin Sinfield would be perfect to raise our profile and get OA/TOF on the map. No need for them to run marathons for us of course, just lend us their name to help gain publicity for these rare conditions.
During this week, we’ll be launching our first-ever Easter Raffle. More details on that soon.
Supporting people of all ages
Have you noticed a subtle change in our strapline?
As part of our recent strategy review, we decided to make our support of the adult community even more explicit, and we have subsequently added the word ‘lifelong’ to our strapline which now reads, ‘lifelong support for those born unable to swallow’.
A small change in wording, but a very real change in focus.
Watch out for the special resources for teens and adults that the Adult TOF working group intend to produce in 2022.
We’d love you to celebrate with us at our 40th Anniversary Children’s party this Spring (if circumstances allow). This will be a fantastic, fun event for younger members.
Our older members deserve some fun too! In November, we plan to have our first members’ conference since 2019, along with a social event for Adults born with OA/TOF.
Strengthening our community
Our amazing TOFS Local Contact (TLC) team have already started planning informal meet-ups over the summer. These will happen in lots of different places in the UK and are an ideal opportunity to meet parents in your area and get to know your volunteer TLC much better.
“A huge thank you to all our members for making TOFS the amazing organisation it is, and we look forward to celebrating with you over the course of the year!”
Diane Stephens, TOFS CEO
All this whilst work continues behind the scenes, supporting research, and campaigning for lifelong multi-disciplinary care for our community.