Remembering Ali – 20 years on
Today marks the 20th anniversary of the loss of Alison Phelan, the beloved niece of Brain Tumour Research Chief Executive Sue Farrington Smith MBE.
Ali had been diagnosed with a brain stem glioma in August 2000 and her family was shocked and horrified to discover how little funding went into research into brain tumours despite it being the biggest cancer killer of children and adults under the age of 40. Determined to help others, they set up the charity Ali’s Dream.
Their charity was instrumental in establishing the All-Party Parliamentary Group on Brain Tumours and led the coming together of brain tumour charities to launch Brain Tumour Research.
Ali’s Dream has raised more than £1 million to fund vital research into childhood brain tumours. Between 2002 and 2009, they supported 10 research projects at UK universities and in 2010, in collaboration with Charlie’s Challenge and Brain Tumour Research, they established the first Brain Tumour Research Centre within the University of Portsmouth, specifically supporting research at the Alison Phelan Memorial Lab.
Sue said: “The strength that my sister Julie and her husband Gary showed so soon after losing Ali and their determination to find a cure will always inspire me.
“Twenty years on and the fate of children and adults diagnosed with these tumours has not improved. The five-year survival rate is just 12% compared to an average of 50% for other cancers. These families need a cure now.
“Inspired by Ali, and the many families we have met along the way, Brain Tumour Research has been a driving force for change, shining a spotlight on the urgent need for more funding for research into brain tumours.”
Today, we are especially remembering Ali and thinking of her loved ones. We are also thinking of all of those who have lost someone or who know someone who has been diagnosed with a brain tumour. Please continue to campaign with us and fundraise for us so that we can continue the fight against this devastating disease.
Together we will find a cure.
Sneak peek at new Brain Tumour Research Believe Magazine
With the new edition of our Believe Magazine coming soon, we wanted to give you a flavour of what’s inside.
The cover of Believe features a stunning self-portrait taken by Edward Ruggiero, who is living with a grade 3 anaplastic astrocytoma. Edward shared his story in our Petition Report and worked with Brain Tumour Research to help raise awareness when the Report was launched in April. He took this photo after a life-threatening infection resulted in surgery to remove part of his skull.
The Summer 2021 issues also celebrates the fantastic fundraising efforts of supporters across the UK, including a grandad’s year-long swimming challenge, a teen’s relentless running and, of course, a hattastic roundup from this year’s Wear A Hat Day. We also share exciting research updates from our Centres of Excellence at Plymouth and Queen Mary University of London, and a campaigning roundup including some major milestones.
There are updates from our Member Charities and we introduce you to our newest Fundraising Group, Perry’s Legacy. Plus, we talk to one supporter about why she decided to share her husband’s story and what it meant to her.
If you’re not on our postal mailing list, but would like to receive Believe through your letterbox, please complete our online form with your full address details and opt in to postal communications. To receive copies of the magazine to distribute in your community, please include ‘box of Believe’ in the message box.
If you found this story interesting or helpful, sign up here https://www.braintumourresearch.org/contact/subscribe and keep up to date with all the latest from Brain Tumour Research.
Brain tumour mum sees daughter say “I do”
A bride who was determined her terminally ill mum would see her say “I do” has been in the headlines this week.
Sharing her story in The Mirror Online, Lisa Bennett described how she brought the “intimate and beautiful” ceremony forward so her mum Jacquie Amor could be there on her special day.
Jacquie was diagnosed with three inoperable secondary brain tumours in August 2020. She spent a short period in hospital, before moving into a care home because she was too ill to return home. She has been told she only has a few months to live.
Lisa’s wedding was originally planned for August last year but was delayed due to COVID-19. After receiving the devastating news about her mum, Lisa decided to bring her wedding forward so Jacquie would see her walk down the aisle. Asking for ideas on social media, she was overwhelmed with messages from people and companies offering their services so she could bring the wedding forward and stay on budget.
On 12th March, seven months after Jacquie’s diagnosis, Lisa married her partner Stu Davison. The ceremony took place at East Leeds Cricket Club, located within walking distance from Jacquie’s care home, and the happy couple tied the knot in a garden igloo.
We wish Lisa and Stu all the best for their married life together.