Lynch Syndrome UK Online

I am still looking for participants for my NHS approved research to take part in a 1-hour one-to-one interview with me.
Your help will be greatly appreciated. I am looking for people who use the NHS and has been diagnosed with any form of inherited colorectal cancer (such as lynch or polyposis), or who has been offered genetic testing but haven’t received their genetic results yet.
Please, share the information and my contact email with anyone who might be willing to help!
[email protected]

Do you want your voice to be heard ladies? Here’s your chance!! Each participant will receive a £50 Amazon voucher for their time. To register you can follow the link below or contact Allison Jones directly (contact info in poster)

https://forms.office.com/e/VWNtzv04Ny?origin=lprLink

Would you like to support this study? Get in touch with Kelly [email protected]

We had the pleasure of speaking at the Oncology in Professional Care Conference at the Excel in London recently.

There was an amazing artist, Francesco, from CreativeConnection capturing the visual minutes on our presentation. It was so clever the way that this visual presentation perfectly captured the important messages from patient participation panel on their experiences of healthcare whilst facing or going through cancer.

Take away thoughts!
•You’re never too young for cancer.
•We should not have to advocate for our own care.
•Research has made tremendous progress in the last 5 years
•Research carried out ‘By’ & ‘With’people of the public rather than ‘About’ & ‘For’
•Patient Participation Involvement is more than a questionnaire
•Consultation and Partnership with Patients works

Our wonderful Dr Neil Ryan had the award for services to LS this year!!! What a guy, what a star!!!

Last on our speaker agenda today Professor Sir John Burn! Speaking about a short update on CaPP3 and testing urine for cancers

The dynamic duo!!! Introducing the Family Gene Kit for parents with LS. The kits give fantastic resources on how to speak to your children from primary to young adults and available through the charity very soon!!! Fruit Fly Collective

Dr Kelly Lloyd and weight management 😁

Dr Neil Rajan and skin cancer.

Georgie Holt -micro satellite testing of skin cancer and sebaceous tumours.

Allison Jones with LS womb cancer surveillance.

Dr Neil Ryan and lady bits 🥰

JV and bowel prep 🤮

Conference has been amazing so far 😁
For those unable to attend this year, save the date - 2025 March 22nd 🥰

Dr Kevin Monohan and bowel cancer. 💩

Dr Adam Shaw of the English Transformation Project.
With our Neil Ryan 😁

Dr Lucy Loong advising on updates about the LS registery 😁

Dr David Church explaining the LS Vaccine 😳

Today is International Lynch Syndrome day.

If you have a family history of early onset cancer then you could have LS.

Although it may sound scary - Knowledge is power and screening can save lives.

www.lynch-syndrome-uk.org

Last call for tickets for the Annual Lynch Syndrome UK conference
Search Lynch Syndrome UK on Eventbrite

Lynch Syndrome U.K. Annual Conference

Date: Sat, Mar 23 • 09:00 GMT

Location: Scarman Rd, University of Warwick, Coventry CV4 7SH, UK, Coventry, CV4 7SH

https://www.eventbrite.co.uk/e/lynch-syndrome-uk-annual-conference-tickets-810114974697?aff=ebdsshother&utm_share_source=listing_android

Our Annual Conference is being held in Warwick University
Grab a ticket before they're gone

The National Lynch Syndrome Annual Conference is back!!
This year it will be held at The Scarman Conference Centre, Scarman Rd, University of Warwick, Coventry CV4 7SH on March 23rd

Lynch Syndrome U.K. Annual Conference Get ready for the ultimate gathering of Lynch Syndrome warriors at the Lynch Syndrome U.K. Annual Conference, where we'll share knowledge, s

Trustee of Lynch Syndrome UK Tracy tells her story, hers is a small piece in her bigger family history of Lynch Syndrome, so many cancers and the loss of her sister had driven her to help find that missing 95%
At LSUK we're proud of the work she does and the changes she's helping to make 💖
“I didn’t really have any symptoms of bowel cancer. I was tired all the time, but I was a busy mum of three young children and worked 50–60-hour weeks. I’m not surprised I was tired, and I certainly didn’t put it down to cancer.”

Tracy was diagnosed with bowel cancer in her thirties. Her oncologist recommended for her to have genetic testing as it was unusual to have the disease at such a young age.

“Despite my clear family history of various cancers, including bowel cancer, none of my family members were tested for Lynch syndrome until I was diagnosed.

“If they were, my Lynch syndrome could have been identified through cascade testing. Instead, I was diagnosed with bowel cancer after going to my GP and then received a Lynch syndrome diagnosis.

“Had I been diagnosed through testing, like my children, then my cancer may have been prevented or picked up at the earliest stage through surveillance colonoscopies.”

Cascade testing is the testing of close relatives of those with Lynch syndrome to see if they also have the condition. For those living in Scotland, Wales, and Northern Ireland like Tracy, it’s falling behind.

Cascade testing is vital to finding the 95% of people who are yet to be diagnosed with Lynch syndrome.

Our new ‘Finding the missing 95%’ report highlights the huge strides that’ve been made for Lynch syndrome in recent years, but a postcode lottery of care still exists. Read the full report below👇
https://bit.ly/3SBOso7