We are pleased to say that TOFS Trustees have recently agreed in principle that the charity should give some financial support to Dr. Vuokko Wallace, who is researching psychological impacts of TOF/OA on families in the TaPSon Project.
TaPSon stands for Tailored Psychological Support Online. Part 1 is a research project for families affected by OA everywhere. The longer term aim (Part 2) is to develop tailored psychological support materials that will be available online through TOFS website for all families affected by OA/TOF.
Some while ago, we decided to dedicate some £20,000 for research. Vuokko’s project is expected (over 4 years or so) to use up a fair proportion of this amount.
Vuokko is a Clinical Psychologist, working in the NHS. She is also an Adult TOF. She spoke at the 2017 TOFS conference, and the 2018 Adult seminar.
As the first stage of her work, many members have already completed her questionnaires – thanks! She has now registered to do this work as part of a PhD degree. The limited support from TOFS should make the project happen much more speedily than would otherwise be the case. We are expecting a wider and greater degree of interest from healthcare professionals because there will be more published papers about this previously virtually unresearched aspect of living with TOF/OA.
The end objective is to set up some online support tools which TOFS members can use themselves.
Updates to this project will be shown here as we get them.