Tony Britton, Fundraising and PR Manager, ME Association.
Severe M.E. Week will get off to a rousing start next week when a singer-songwriter with a pure voice that can turn instantly to pain and rage releases an album of her music on 8th August to raise money for biomedical research into the disease.
The album – ‘It’s Still M.E.’ by Kara Jane Spencer – will be preceded on the 1st of August by a lead single called ‘Baby Breathe’. Both can be downloaded and streamed wherever you buy your music with the proceeds being donated to the ME Association’s Ramsay Research Fund.
The releases will be an immense achievement for Kara, who was diagnosed with M.E. 13 years ago after suddenly losing the ability to walk.
“Until then I was healthy and active – “loud, crazy, and always laughing”, in the words of my sister. My condition steadily deteriorated, until seven years ago I became completely bedridden.” she says.
Since then, she has been lying flat on her back in bed with the ceiling of her room her most constant companion. She only has enough energy to record a line or two of her songs at any one time.
And it will be the start of interesting times for the Ramsay Research Fund as Kara wants to raise £100,000 towards the launch of Britain’s first ME/CFS tissue bank.
- We will provide details about how you can purchase the new album and single nearer the time of the launch. If you’d like to support Kara’s appeal in the meantime, you can visit her JustGiving page to make a donation.
Kara needs round-the-clock nursing care to help manage her severe pain and aid her breathing. She has to use supplemental oxygen 24 hours a day.
The 29-year-old established singer-songwriter has already spoken about how doctors have warned that her condition could shorten her life expectancy.
“As people with M.E., we hear so many lies about our condition that love, loss and anger come across as the three central elements of my music. There’s a lot of anger among patients out there which I try to capture.
“All we’re asking is for a little bit of justice and consolation for ourselves and a level playing-field with other similar conditions,” she told us.
“If I can pull this off, this would be my life’s accomplishment. Above all else, I would dearly love to leave a functioning tissue bank as my legacy.”
Her friend, well-known Severe M.E. advocate Naomi Whittingham, recently told the BBC:
“Kara is unable to sing more than a line or two at once and, with hospital admissions adding further delays, this is a process that has taken nearly two years.
“Her dream is to produce an album of her own songs while it is still possible. Kara is a gifted singer and songwriter. The themes of loss, pain and fragile hope in her songs will resonate with many, particularly in these difficult times.”
The BBC put out an appeal during covid lockdown for musicians to record the backing tracks and a sound engineer to mix the recordings and complete the album.
The appeal reached the ears of 27-year-old sound engineer Liam Hicks, who took on the job of bringing the songs to the online music stores.
“Actually, it couldn’t have come at a better time. There were so many live session musicians and sound engineers who were out of work due to coronavirus, me included, so we had lots of offers. We ended up with about 27 different musicians taking part,” Liam said.
The lead single ‘Baby Breathe’ was written in memory of an aunt who Kara lost when she was aged seven: ‘I will hide in your heart. I’ll reside in your skin. I will live every time that you breathe.’
“When I was told of my uncertain life expectancy, I knew my time with my nephew Freddie might be as limited as mine was with my aunty when I was younger.
“I realised he would have to have the same pains I’ve had growing up without her. Above all I wanted to hear her voice, so I wanted to leave my voice for him so he could hear it whenever he wanted even if I was no longer there,” said Kara.
Raising funds for biomedical research
Supporters can buy Kara’s single and the album wherever they obtain their music downloads and the money will come straight to the Ramsay Research Fund to help us reach the goal of setting up a Post-Mortem Tissue Bank to study the causes of M.E.
Such a project will be very expensive and if the appeal falls short of target, we reserve the right at the end of 2021 to apply the proceeds to an equally deserving biomedical research project which will be discussed with Kara beforehand.
Kara has set up a JustGiving page: Kara Jane Sings, to help her reach her target of £100,000 and would be grateful for any donation received.
She can be followed at her website https://karajanesings.com
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
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