Story
Please help me to save my partner Lee and many thousands like him. Lee has stage 4 Bowel Cancer and has shown to have a mutation called BRAF V600E. This means that the tumours become resistant to Chemotherapy and other treatments. 15-20% people diagnosed with Bowel Cancer, Skin Cancer, Non-Small Cell Lung Cancer & Hairy Cell Leukaemia will have this mutation. Meaning thousands of people like Lee will die from this disease. With further testing and understanding there could be a cure for this type of cancer.
To extend Lee’s life, and therefore others, we have been given the opportunity to access a method called CRISPR which traces faults in the genes. When these faults are found they can be switched off using targeted treatment to effectively kill off the cancer cells.
When Lee’s cancer is better understood better matches can be made for treatment. Achieving our target would fully fund crucial CRISPR sequencing and a dedicated, full time researcher at University of Birmingham. This research could lead to the answer that saves Lee from an early death.
Please help us to achieve this. We can’t do this with out you.
For those of you who know Lee he is the most incredible, unusual and enigmatic man and this world should have him in it. There is so much love for Lee so I hope you can help us with our determined fight to turn this situation around. As ever, we plan to meet this with optimism and a strong belief that anything is possible and anything can change. Let's start by giving Lee and thousands of other loved ones the chance they deserve and need.
For those who don’t know Lee or are interested to know more please read on below for the longer version of how we arrived here.
For those that already want to support this movement please do so by making a personal or business donation no matter how big or small, do your own fundraising, share this page far and wide (please don’t under estimate the power of sharing) and help us achieve the start of something amazing. Every penny will be going directly to the cause.
With your help and support, we can change lives, prolong lives and make a real difference.
The Full Story:
In April 2017, our world came crashing down. At age 34 my partner Lee was diagnosed with advanced bowel cancer. A colonoscopy revealed a 15cm by 5cm tumour, more commonly known as Colorectal Cancer. If that wasn’t enough to deal with, doctors also discovered that the cancer had spread to his liver, where a growth the size of a small melon was detected. Lee had to undergo a bowel resection which removed 4/5ths of his bowel (May 2017) followed by months of chemotherapy (July-Sept 2017). He then had further surgery to remove 50% of his liver (Sept 2017) followed by months of gruelling chemotherapy (finished Feb 2018).
At first, we tried our best to be brave because we had heard Bowel Cancer is one of the easiest to treat, with chances of recovery and survival reported to be quite good. What we didn’t realise is this statistic doesn’t actually apply to stage 4 cancer, which is linked to just a 5-10% survival rate, at best, over a 5-year period. Lee is a fighter and we have both tried to remain positive throughout his treatment but as we were just beginning to think that perhaps the worst could now be over, we were dealt another blow and would have to endure a further major setback.
After a routine check-up during 2018, doctors told us that the cancer was back and had now spread to Lee’s lungs and diaphragm. More invasive and painful surgery was now required and more chemotherapy was to follow. At that point, I remember my deep despair, thinking that no one deserves to suffer so much, especially someone as gentle and as caring as Lee.
During the next round of operations and treatment I tried to learn and research more about this particular form of aggressive cancer, which seems determined to rob us of a long and happy life together. It was at this time Lee was found to have a BRAF V600E mutation, which means that his cancer type ‘mutates’ whenever it is attacked. Whenever we try to treat this cancer, it learns what is attacking it and mutates so we can’t stop it. The gene mutation makes his tumours resistant to chemotherapy and other treatments. Up to one in five people with certain kinds of cancer will have this mutation, which means a very high chance of mortality.
Having met with several charities and contacted many researchers, I came across Professor Andrew Beggs at the University of Birmingham Medical School. He is currently leading the research on the BRAF V600E mutation and is world renowned for his work. His team are beginning to understand how this cancer mutates and other trials have taken place that have shown promising results in slowing the cancer spread. With their technology, the team at Birmingham Medical School have a real chance of achieving a breakthrough. There is now at least, a glimmer of hope but this essential and specialist research needs funding.
The Breakthrough
To extend Lee’s life we have been given the opportunity to access a gene editing tool called CRISPR. It finds the faults in the genes so they can be switched off. If this type of cancer is caused by errors in the genes, CRISPR could be like a genetic Spellchecker – finding the errors so we can fix them.
With further research, it could even lead to a cure for this type of cancer.
A man with a plan
Andrew Beggs and his team are beginning to understand how this cancer mutates. Trials have taken place that have shown promising results in slowing how fast the cancer spreads. The team at Birmingham Medical School have a real chance of achieving a breakthrough.
That’s why we are raising money to directly support research of the BRAF gene in bowel cancer at the University of Birmingham.
Professor Beggs says, “Having a faulty BRAF gene makes a bowel cancer much more difficult to treat. We don’t completely understand why and we need to find out. A technique called “Genomewide CRISPR” allows us to turn off each gene in turn. By working out which ones the cancer cells is using, we can select new drugs for each patient and understand how we can effectively kill cancer cells with the BRAF fault. With your support we can fund a PHD placement to help our senior scientist carry out the CRISPR technique on cancer cells with the BRAF fault.”
Running out of time amidst a global crisis
April 2020 and Lee has just had his fourth operation - a second painful Lung operation which also required removing sections of his 5th & 6th rib! We are facing our usual battle but during a pandemic it is even harder.
Lee and I know that now isn’t a great time to launch this appeal, given the impact COVID-19 is having across the world. However, time is fast running out for Lee and others like him. This vital research could provide a solution that could save the precious lives of many people, and especially those who we value, love and cherish. With your help and support, we can change lives, prolong lives and make a real difference.
This research could lead to the answers that saves people from an early death. Achieving our target would fully fund crucial CRISPR sequencing and a dedicated, full time researcher at University of Birmingham.
What you can do
By making a donation today (personally or through your organisation), you can help give Lee and thousands of other loved ones the chance they deserve and need. Please share this page far and wide (please don’t underestimate the power of sharing) and help us achieve something amazing.
(The University of Birmingham is an Exempt Charity, No. X7237)
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