Our Retired Fundraising Groups

4 min read

Our retired Fundraising Groups

Our Fundraising Groups are set up by families who have lost loved ones to brain tumours or have a loved one with a brain tumour diagnosis. Sometimes there comes a time when a family may wish to continue their work of raising awareness and funds, but in a less formal way.

We are grateful to all our Fundraising Groups, past and present, for the invaluable work they do within their communities to promote the brain tumour cause and make a difference in our mission to find a cure for all types of brain tumours.

The following are Fundraising Groups who have retired from active duty, but remain very much a part of our brain tumour community:

Aladdin's Lamp Fund

Sandy Foulkes set up Aladdin’s Lamp Fund in memory of beloved husband and father, Bill. Bill passed away in April 2010, thirteen months after his diagnosis with a glioblastoma multiforme. He was passionate about golf and boats and the owner of a yacht chandler’s called Aladdin’s Cave, hence the inspiration for the name of the Fundraising Group. Sandy was introduced to Prof Geoff Pilkington, who heads up research at the Brain Tumour Research centre of excellence in Portsmouth, through a mutual scientist friend and now helps Geoff out with administrative duties, as well as undertaking fundraising for Brain Tumour Research.

Read Bill's story. 


Hazel's Light

Hazel Thomas was a devoted mother to three much loved children.  She passed away in December 2011 at the age of 48, having been diagnosed 13 years earlier with a grade 1 astrocytoma, which tragically had progressed to being a grade IV at the end.
 
Having realised how far brain tumour research is behind research into other cancers, Hazel's Light has been set up by sisters, Emma and Nia, and brother, Martin, to commemorate their mother and to bring hope to other families who may be touched by brain tumours.

In for a Penny

In for a Penny was set up after Glenn Karpel lost his beloved wife Penny on 15th September 2017. Penny had originally been diagnosed with a low grade brain tumour in 2009 after suffering a blackout. By October of 2016, Penny was experiencing significant mobility problems. Glenn, along with Penny’s daughters, Claire and Stefanie, looked everywhere to find a way to extend Penny’s life, but in the end they had to accept that there was no more treatment available. Devastatingly Penny slipped into a coma.  An agonising 12 days later, still at home and with her family by her side, Penny took her last breath.  
 
Shocked at the lack of options and angry that there seemed to be more investment and research into novel anti-cancer therapies happening in Europe, the United States and in Israel than in the UK, Glenn is passionate that more needs to be done to prevent brain tumour patients deteriorating to the stage when only palliative care and support can be offered and families can only wait for the inevitable to happen. He argues that the cost to society is also significantly more than an upfront investment in stopping the disease at the outset.

Read Penny’s story.

Loubob's Legacy

Loubob's Legacy was set up by family and friends of a totally unique young man who passed away at the age of 13, having endured leukaemia, a crushed leg in an accident with a lorry and then secondary brain cancer when it seemed that the doctors had written him off. Throughout his short life, Louis was almost never without a smile or a joke. He kept everyone strong when they were supposed to be keeping him strong. Weeks before his family lost him, his baby brother Jesse was induced so that Louis could get to know him and hold him. Jesse looks a lot like his brother Louis. His mother can't wait to tell Jesse about his amazing big brother.

Read Louis' story.

Mark “Bomber” Lancaster Trust

Sheila Lancaster set up the Mark “Bomber” Lancaster Trust with her young sons, Harry and Alex, in memory of her husband and their Daddy, Mark. The “Bomber” nickname came about through sharing a surname with the famous WWII aircraft.

Mark was diagnosed in January 2008 with an anaplastic oligodendroglioma and lost his brave fight against the brain tumour on 16th December 2012, aged 39. Sheila would very much like Harry and Alex to become involved with the Trust and take over when they are older so that they keep alive their daddy’s memory and remember his courageous spirit. Her dream is that the boys will see a cure for brain tumours during their lifetime and will be proud that funds raised for research through their daddy's charitable trust was part of this pioneering breakthrough.

M.I.N.E

Having suffered with headaches for many years, Mel Hennessy was diagnosed with two meningioma tumours just a few weeks after miraculously giving birth to her daughter Daisy Boo in 2009. Mel has lost the sight in her left eye, but she is just thankful to be alive. She wants to do anything she can to raise awareness and funds for brain tumour research. Her Fundraising Group name M.I.N.E stands for Money Is Needed Every Day.

Read Mel's story.

 

 

Naomi's Fight for Life Fund

Naomi was just four years old in 2007 when she was diagnosed with an ependymoma, an aggressive, cancerous brain tumour.   She has undergone three craniotomies, almost 30 long and intensive bouts of chemotherapy and we have endured a number of scares and setbacks, but Naomi is currently stable.  We are now six years post diagnosis and five years post treatment - most brain tumour patients die within that timeframe...
 
"We originally set up Naomi's Fight for Life Fund to help other charities find a cure, as well as provide care and quality of life for those touched by cancer, but have now joined Brain Tumour Research as an Fundraising Group where we can enjoy the security and support of a nationally recognised charity with the use of a range of materials and merchandise, including fundraising packs and t-shirts, as well as the use of a registered charity number which will give us access to Gift Aid, our own logo and PR support."
 
Read Naomi's story.

Officially Lisa Connell

This Fundraising Group was set up to raise awareness of brain tumours, to improve outcomes for brain tumour patients and, ultimately to help find a cure.

Lisa Connell, who set up the Group, was diagnosed with a meningioma aged 26, after falling pregnant; sadly, she lost the baby. Having undergone Gamma Knife Surgery and some years later, surgery and radiotherapy when the tumour was found to be growing, Lisa now lives with regular painful facial spasms. Lisa was told she couldn’t have children as meningiomas can grow dramatically in pregnant women due to hormonal change, but amazingly she now has a miracle child.

Read Lisa’s story by searching 'Lisa Connell' on our website.

For information about Officially Lisa Connell

Make a donation to Officially Lisa Connell


Robin Menary Foundation

The Robin Menary Foundation was set up by Nikki Boyd (Robin's sister), their mother, Paddy Menary, and their uncle, Terry Collins, following Robin's death, in August 2011, leaving his wife, Catherine, and whole family devastated.  When Robin was diagnosed with a grade 4 glioblastoma multiforme he was a strong, healthy, happy and very sporty 36 year old, looking forward to the birth of much longed for twins. He died just 17 months later when his beautiful babies, Rory and Rachel, were just 15 months old. 
 
It was always Robin’s intention to raise funds for brain tumour research when he was well again and his family are determined to do this in his memory. It is this which keeps them strong despite the unbearable grief.  It is their dearest wish that someday someone diagnosed with this type of tumour will be told they can be cured. 
 
Read Robin's story.

Robyn’s Nest

Ryan Crispin and partner, Alexandra Parr, set up Robyn’s Nest following their 18-month-old daughter’s diagnosis with a brain tumour in December 2016. Despite the tumour being inoperable, Robyn has grown into a beautiful young girl and her health is currently stable. Ryan and Alex’s Group has been actively fundraising for us – placing collection boxes in the community, abseiling down the fearfully high Spinnaker Tower and organising an epic trek ‘from sofa to summit’ up Ben Nevis! You can still donate to celebrate their achievements.

 

Sophie's Wish

Sophie's Wish was set up by the family and friends of Sophie Burchill, who was diagnosed with an aggressive ependymoma at the age of just 11 months. Sophie underwent emergency surgery to remove the tumour, followed by 16 months of chemotherapy. Whilst in and out of hospital the family witnessed many other children with brain tumours, some who were worse affected than Sophie, others who passed away.

All those involved in the Fundraising Group have been shocked to discover that diagnosis and survival rates have not moved on for at least 30 years and hope that Sophie's Wish will help to redress the balance in brain tumour research funding so that better treatments and ultimately a cure can be found.

The Free Bird Trust

Dean was a healthy man who loved his family and was very loyal to his friends – he had the same best friend since the age of seven.  When Dean was 27 he was diagnosed with a glioblastoma multiforme grade 4 which he fought with so much courage and his indomitable sense of humour; nevertheless he was cruelly taken from us just seven months later.
 
Dean will always remain in our thoughts and in our lives and we talk about him daily. We, as a family, promise to continue the fight against brain tumours in his honour. We want to know why so many people die very quickly from this aggressive form of brain cancer? We hope that the funds raised by the Free Bird Trust in Dean’s memory will make a difference and help find answers to many questions – so little is known about brain tumours.

Read Dean's story.

The Glenn McMahon Foundation

Husband, son, father and step-father, Glenn McMahon was diagnosed with an aggressive glioblastoma multiforme grade 4 brain tumour after experiencing co-ordination problems on the golf course. He married Wendy in February 2014 and, knowing their time together would be cut short, the couple set about making the most of their lives through travel, socialising and their mutual love of fine food. Glenn died in June 2015 at the age of 53.

Wendy established The Glenn McMahon Foundation in 2015 to raise funds and awareness for Brain Tumour Research in memory of her beloved husband. 

Read Glenn's story.

The Micky Deans Trust

Mick was a wonderful husband to Louise and father to his two children, Lily and Harry. He was diagnosed with a grade 4 glioblastoma multiforme in December 2014 after suffering a couple of big seizures. While the tumour remained stable for some months following chemotherapy and radiotherapy treatment, tragically Mick suffered a bleed on the brain. He passed away soon after surgery in August 2016 leaving his family and close friends, known as The Lads, heart-broken. They have since set up The Micky Deans Trust to raise vital funds for research for a cure, sadly too late for Mick, and to ensure that Mick’s name is never forgotten.

Read Mick's story.

Thomas MacIntyre-Valentine Memorial Fund

Thomas MacIntyre-Valentine was diagnosed with an inoperable brainstem glioma in 2012. Following his diagnosis, he was treated with radiotherapy and chemotherapy and put on steroids. He lived with the tumour for eight years, but in February 2020, it started to spread and he declined quickly. Thomas passed away in June 2020, aged 30.

A year on from her tragic loss, Thomas’ wife Sheira has set up The Thomas MacIntyre-Valentine Memorial Fund to continue his legacy. The Fundraising Group will ensure his memory lives on, whilst raising money and awareness to help find a cure for this devastating disease.

Read Thomas’ story

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