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We were glad to have been invited to participate in the Rare Disease choir to record the song #ThisIsMe at the iconic London building – The Abbey Road Studios, in preparation for this year’s #RareDiseaseDay coming up on 28th February.
We were glad that the Founder and Chair of our charity – Fola Afelumo with our nominated TTP Survivor – Louise were there to represent us.
TTP is called a Rare disease, so Rare that even some medical professionals do not know about TTP(Thrombotic Thrombocytopenic Purpura)!
This is why awareness of rare diseases like TTP are key and a project like ‘This is Rare’ – #ThisIsRareThisIsMe is important because it brings a community of people fighting #RareDisease or conditions or cold rare together to have one Voice that can be projected to the outside world – to tell the world that they are special.
Lack of awareness of a Rare disease equals a lack of prompt diagnosis and appropriate treatment being administered or given to people with rare conditions, survivor or patient; Treatment can br missed, delayed and results to fatalities.
Fola said “I am glad that AOFAC Foundation is part of the project and I have personally enjoyed the process;
Having to meet new people and the recording process. But most of all, I really resonate with the lyrics of the song from start to finish.”
Louise said “ I had a brilliant experience participating in the ‘ThisisRareThisisMe’ project. The training was excellent and there was lots of lighthearted humour and banter which put us at our ease. The day itself was fantastic, and it was great to spend time with Fola and others like myself who had experienced rare illness. The song we learned was really moving, and at times I felt emotional.
Thank you very much for inviting me Fola. It is greatly appreciated”
The recording was directed by the icons – Carrie and David Grant and will be released to coincide with Rare Disease Day which is on 28th February.
#AOFACFoundstion #TTP #RareDiseaseDay #ThisIsRareThisIsMe
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