Form a human chain on Saturday
Everyone is invited to help the lovely people at Birthlink move all their remaining stock from Lower Gilmore Place to Bruntsfield Place on Saturday at 2pm. The idea is to have enough people to transfer all the remaining objects hand to hand to their new home.
Help Beau get the medicine she needs to save her sight
Beau Johnston is in second year at the University of Glasgow studying law with French. She was due to spend her third year studying law in French at he Sciences Po Paris as part of her degree. She is a Member of the Scottish Youth Parliament and has represented Team Scotland at the United Nations in Geneva, putting forward the voice of Scotland’s children and young people.
She was the sword bearer at the ceremony in The Scottish Parliament to celebrate the 25th anniversary of the parliament when King Charles attended. She has worked with the Glow Gold childhood cancer campaign and appeared on the BBC Children in Need, She also sings with her band Low Tide.
She has achieved all of this in spite of having a multiply progressive Hypothalamic Optic pathway glioma BRAF KIAA 1549 fusion, diagnosed at the age of 2. Following de-bulking surgery, she has required eight further courses of chemotherapy for multiply progressive disease over the last 17 years as her tumours have failed to quiesce.
The tumours have already taken her sight in her right eye and chiasmal fibres in the left, rendering her visually impaired. They have also removed part of the blood supply in her circle of Willis. Unfortunately, and unexpectedly, her scan five months post chemotherapy (8th line), which has been just performed has revealed a new tumour that has arisen since finishing treatment. It is on her remaining visual nerve fibres with surrounding reaction of these fibres, threatening her remaining sight. We have tried to avoid radiotherapy/Proton therapy with its risks of secondary cancers, stroke, risk to her remaining vision and cognitive impairment given that this may not provide a definitive “cure”.
The drug Tovorafenib or Ojemda has shown a 93% benefit for children and young people with Beau’s disease type, with a 67% complete/partial response.
However, the FIREFLY1 trial has closed and Beau is ineligible for the FIREFLY2 trial as her tumour is not newly-diagnosed.
The only current way of accessing this drug in the timeframe required, as the compassionate use or Expanded Access Programme (EAP) has been closed, would be to take her to the USA for treatment, with a cost of the drug alone of $35,000 per month.
This would amount to more than £450,000 per annum, excluding hospital fees.
Her parents, Emma & Colin Johnston, who are both doctors, have written an open letter to Madame Anne Beaufour of the IPSEN company asking for her help.
They say that “despite working in good jobs as doctors in the UK is just completely beyond our means in the timeframe required to save her sight.
“We have a beautiful, radiant, kind, able-bodied , independent and intelligent young woman, who we hope has so much more to see and do in this world and who has so much more she wants to do to help others. It would mean the world to her and us if there were anything in your or IPSEN’s power, that could be done to enable our access through activation of the EAP or compassionate usage through a Named Patient Unsolicited Request.
In the meantime there is a GoFundMe page here where anyone can donate to help Beau.
Job alert!
Equal Footing Porty who run the beach wheelchair service in Portobello are needing a summer employee.
Painting on show in the National Gallery of Scotland
The Honorary Consul of the Czech Republic Veronika Macleod is photographed below with the Depute Lord Provost Lezley Marion Cameron in the National Gallery of Scotland admiring the painting by Oskar Kokoschka which is now on display there in room 26.
This year is the 80th anniversary of the ending of the Second World War and this painting was presented to the National Gallery in 1942. It was a gift from the Czechoslovak Government in Exile to the Scottish people in appreciation of their support during the war.
The painting is entitles Zrání which means High Summer.
Kokoschka had moved to Prague from Vienna in 1934 becoming a Czechoslovak citizen. He escaped to London after the signing of the Munich Agreement in 1938 which allowed Nazi Germany to annexe key territories in Czechoslovakia. He could take £5 and an unfinished painting with him. He reworked this painting the following year. Although the scene is one of relaxation and bathing it was in stark contrast to the turmoil in Europe at the time.
Music in Hospitals & Care
UK music charity Music in Hospitals & Care runs regular ‘Music Jams’ with professional musician Charlie Gorman at The Hive, a specially created community cafe space for patients at The Royal Edinburgh Hospital. The live music experiences are developed in partnership with NHS Lothian Charity’s arts and health programme Tonic Arts. They are specifically designed to support and improve the mental health of both patients and staff by encouraging participants to get up on stage and join in with the music.
Live music plays a powerful role in rehabilitation and recovery for people with acute mental health problems. At The Hive, regular live music sessions have become an integral part of patients’ routine. This consistency fosters trust, creativity, and deeper engagement among participants.
Music in Hospitals & Care singer and guitarist Charlie Gorman, who hosts the Music Jams, explains: “I’ve seen how valuable and therapeutic participation in music can be to both body and mind. It’s like a weight has been lifted off their shoulders when people make the brave decision to get up on stage and play an instrument – or sing a song in front of their friends and other audience members.”
Through Music in Hospitals & Care’s partnership with NHS Lothian Charity: Tonic Arts, last year alone the charity reached over 2,000 patients and delivered 116 hours of live music in healthcare settings across Edinburgh & the Lothians. In addition to mental health services, this included people living with dementia and those who are seriously ill.
Founding Editor of The Edinburgh Reporter.
Edinburgh-born multimedia journalist and iPhoneographer.
