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Lorna and Sophie's Mucosal Melanoma Research Fund

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The Sad Bit:
 
My mum Helen was diagnosed with mucosal melanoma in March 2019. She died exactly 2.5 years later despite going into remission in the summer of 2020. I can’t begin to describe the pain we are going through, so I’m not going to. My wonderful friend Sophie convinced me to join her in completing the Henley Sprint Triathlon to raise money and awareness for this awful and rare cancer, which requires much further research and funding to achieve better treatment options and improve the quality of life for its patients.
 
As a physio, my mum was a very health-conscious woman (besides the odd slice of cake and double G&T) who was extremely wary of what she put in and around her body. If nothing else, I hope her unexpected diagnosis and death motivate other people to enjoy and live their lives as best they can.
 
 
The Money Bit:
 
Three main cancer research units in the UK (that I know of) have previously completed studies on mucosal melanoma or trials that were open to patients with mucosal melanoma. They are The Royal Marsden, The Christie Hospital and Churchill Hospital Oxford. Mum was waiting to hear if she had been accepted onto one of these trials when she died. The money we raise will go towards research at one of these centres, and it is possible to request that our donation goes towards a study that directly helps patients with MM. We hope these efforts will give more comprehensive knowledge about MM, offer more potentially effective treatment options and, in the end, improve the life expectancy and quality of life for MM patients.

The Race Bit:
 
Sophie (who may I add is postpartum and recovering from a C section) and I began our training towards the end of last year, which meant a lot of running towards each other in the dark and freezing cold at 7 am before work.
 
Now we are just nine weeks away from our race day, so please donate and stay tuned for updates as the training intensifies. We are taking part in the Henley Triathlon Sprint Race on July 10th.


The Science Bit:
 
Mucosal melanoma (MM) is a rare melanoma subtype originating from melanocytes within sun-protected mucous membranes. Compared with cutaneous melanoma (CM), MM has worse prognosis and lacks effective treatment options.
 
About 90% of melanoma cases are cutaneous melanoma (CM) mainly induced by exposure to UV light whereas MM is a rare type of melanoma that presents on mucosal surfaces of cavities within the body. Although MM makes up approximately 1% of all cases of melanoma, it is one of the most aggressive subtypes and exhibits a worse prognosis compared with the common CM. Based on a retrospective study, the 5-year survival rate of MM, considering all stages at the time of diagnosis, is 10-20% when compared to 93% for CM.
 
Surgical excision is predominately the first choice for MM however, due to the growth pattern and limitations of MM sites, it is extremely difficult for surgery to achieve good results.
 
While targeted therapies for MM are limited, multiple clinical trials targeting irregular genes in MM are ongoing.
 
There are only a few available targeted therapies for MM clinical trials: BRAF, MEK, CDK4/6 and C-KIT inhibitors, with limited clinical use and efficacy. Therefore, it requires more efforts on developing other alternative targeting strategies based on mutated genes in MM.
 
In summary, both basic research and drug discoveries in CM have achieved enormous progress, whereas little is known about either how MM initiates or how to target MM. As a result, patients of MM are suffering from limited treatment options and undesirable response rates that lead to extremely poor prognosis.

 
The End:
 
We hope this race will be the first of many challenges as we raise money for further research into this devastating disease.
 
Thank you very much for reading and for your donation. Wish us luck!
 
Love,
 
Lorna and Soph x
 
 
 
 
 
Donate

Donations 

  • Anonymous
    • £650 
    • 2 yrs
  • Colin Woods
    • £50 
    • 2 yrs
  • Kate Potter
    • £10 
    • 2 yrs
  • Sophie Hiller
    • £10 
    • 2 yrs
  • Louise Douglas
    • £20 
    • 2 yrs
Donate

Fundraising team (2)

Lorna Hall
Organizer
England
Sophie Cordwell James
Team member

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